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Internationally, increased attention is focused on the provision of personalised supports to people with disabilities and enduring illness. Personalised or individualised supports are those which address the unique needs of the individual focusing on their strengths and abilities, which are chosen by the person and which are delivered in the community fostering inclusion and participation. Recent Irish policy documents have also described and recommended a way of supporting people with disabilities which involves a reframing of provision from services towards individualised supports. The Value for Money and Policy Review of Disability Services recommends that the goal of full inclusion and self-determination for people with disabilities be pursued “through access to the individualised personal social supports and services needed to live a fully included life in the community”.

Aims of the evaluation

In this context this evaluation was concerned with identifying the outcomes for people with disabilities and mental health difficulties receiving individualised supports; particularly on indicators of social inclusion and quality of life but also in relation to their individual aspirations, including;

  • the processes which have led to effective change and transition in terms of personal outcomes and the delivery of individualised supports.
  • the direct costs of providing the personalised support for people using services and how these costs have changed as a result of the changes in support provided.
  • the implications for the further development of personalised services in an Irish service context.

Follow-up study

A further data uplift by Prof. Roy McConkey and colleagues, Ulster University (UU) is taking place on this study. This will enable the longer-term impact of a move to independent living to be established as well as the impact on those individuals who had only just moved at the end of the initial study. 


Key Points
  • Personalised supports for people living in their own homes produce better outcomes than congregated care/group homes.
  • Quality of Life improvements are clear for those who move from congregated care.
  • Personalised housing and support options are feasible to implement in Ireland across people with a variety of disabilities/mental health difficulties.
  • Personalised supports can save on costs for most people. 
  • Group homes do not offer personalised accommodation or support – this has implications for how future deinstitutionalisation should be carried out.

Summary available here.


Covid 19, Uncategorized
From the HSE and Health Protection Surveillance Centre

Guidance on the use of Surgical Masks when healthcare is being provided in
the context of the COVID-19 Pandemic

(Changes to the Guidance Issued on April 22nd 2020)

1. Clarification of the basis for the guidance on use of surgical masks published
on April 22.04.2020.
2. Clarification on the application of the 15-minute rule.
3. Clarification on safe use of surgical masks.
4. Clarification on disposal of surgical masks in settings where there is no direct
access to a healthcare risk waste stream.

On April 21 2020, National Public Health Emergency Team (NPHET) decided that
HPSC guidance should be updated in accordance with a NPHET decision on the use
of surgical masks. This guidance reflects that NPHET decision and replaces previous
HPSC guidance on the use of surgical masks in the context of providing healthcare
during the COVID-19 pandemic. The content of this guidance will be incorporated into
other Infection Prevention and Control guidance documents as they are updated.
Use of surgical masks by healthcare workers in the context of viral respiratory tract
infection has two objectives:

1. To reduce the risk of droplet transmission of infection to the wearer.
2. To reduce the risk of droplet transmission of infection to others.

Use of surgical masks for these purposes is in addition to and is not intended as a
replacement for other measures to reduce the risk of transmission of infection. These
measures include hand hygiene and maintaining a distance of 2 m between people
whenever possible. Surgical masks must be donned correctly and should remain in
place covering the nose and mouth throughout the period of use. Masks should not be
moved up and down over the nose and mouth.

  • Surgical masks should be worn by healthcare workers when they are providing
care to people and are within 2 m of a person, regardless of the COVID-19
status of the person.

Surgical masks should be worn by all healthcare workers for all encounters, of
15 minutes or more, with other healthcare workers in the workplace where a
distance of 2 m cannot be maintained.

Note. This means that a healthcare worker should don a mask if they anticipate being
within 2 m of one or more other healthcare workers for a continuous period of 15
minutes or longer. It is not intended that healthcare workers should attempt to estimate
in the morning the total duration of a sequence of very brief encounters that may occur
during the day.

Safe use of masks
Always change your mask:

 When you answer the telephone or take a drink /break.
 When leaving a clinical area.
 If your mask is wet, dirty or damaged.
 When leaving a person’s home.

Never fidget with your mask when it is on and never store your mask in your pocket.

When a surgical mask is no longer required or if a fresh surgical mask is needed the
surgical mask must be removed and disposed of safely.

  •  If you have access to a healthcare risk waste stream discard the surgical masks
in to that waste stream.
  • In settings where there is no access to a healthcare risk waste stream, for
example in a person’s home, volumes of waste are generally low and in that
context the following approach is acceptable.
  • Person with known/suspect COVID-19: In this context the mask will be used
in association with other elements of Personal Protective Equipment (PPE).
The mask and all other items of PPE should be discarded into a plastic bag.
The bag should never be filled more than three quarters full. This first bag
should be securely tied and placed inside another waste bag (double bag).
This bag should be stored securely for 72 hours before leaving it out for
collection in the normal domestic waste stream.
  • Person who is not known or suspected to have COVID-19: In this context
the mask may be used alone or in association with gloves or apron when
required for Standard Precautions. In the absence of a specific know
infectious disease risk (such as COVID-19) the mask and other items may
be discarded as domestic waste.

Click here to download Poster: COVID19-PPE-Safe-Mask-Wear-Poster

Covid 19, Uncategorized

Thank you for all of the fantastic support for the #Inthistogether Wellbeing campaign, from the Department of Health and the HSE, this will continue to push out across the airwaves into June.

The HSE has creates some useful resources on: Supporting someone with a disability during the coronavirus pandemic

The campaign radio ads can be found here

The website is and the hashtag is #inthistogether.

Partners are recommended to continue to share their wellbeing content under the hashtag #Inthistogether.

Next week there will be features on

  • Bord Bias ‘Bloom at home festival’ happening on May 31st
  • GAAs Club Step Challenge getting people out and physically active over the next month
  • safefoods START campaign helping parents to cope at home
  • Cruinniu na N’ogs build to the national day of free creativity for children and young people on the13th of June

Other Resources:

The Government’s roadmap for reopening society and business can be found here.

Family Carers Ireland – offering family carers free counselling sessions

Family carers sometimes have difficulty coping with their emotional well-being and their mental health and are more likely to struggle with stress, anxiety and depression than the general population. As a carer, there are times when you may find yourself struggling with your mental health and emotional well-being due to a combination of the demands of your caring role, and the additional challenges you might be facing as a result of the COVID-19 pandemic. Family Carers Ireland offer help to family carers, as they believe no one should have to care alone. They have developed a free, short-term online and phone counselling service for family carers and will connect carers with a qualified counsellor from a panel of approved professionals.

The service can be accessed through the website  
or through the National Freephone Careline on 1800 24 07 24. 


Covid 19, Uncategorized

Older people have moral right to live in the community and be free of institutions

By Gerard Quinn, Ann Campbell

Original article published in the Irish Times on 20 May 2020

On Friday May 8th, Leo Varadkar reflected aloud on the Late Late Show on whether nursing homes are a wise investment for the future. The Taoiseach is one of the first political leaders in the world with the political imagination to think beyond orthodox arrangements.


He made his remarks in response to a question about whether he had any regrets with respect to the Government’s response to Covid-19. Uppermost in his mind must have been the sad reality that a high proportion of deaths in Ireland (and indeed right around the world) have taken place in care homes. Living in these places makes it intrinsically difficult to physically distance oneself. Protecting the service personnel attached to them is also a major challenge. Living with any concentration of people categorised as “vulnerable” to the disease is a disaster waiting to happen.


And so, the Taoiseach rightly reflected on a future where we might have to rethink the wisdom of such settings and the wisdom of public investment in them.


He speculated that we may have to think about elder care along the lines of disability care where it has in fact been official Government policy since 2011 to end congregated settings for persons with disabilities. That is, of course, still a work in progress. But at least the official ambition since 2011 has been to facilitate community living for all people with disabilities – regardless of age or severity of disability. More than this, the UN Convention on the Rights of Persons with Disabilities, which Ireland has ratified, recognises institutionalised facilities as a violation of human rights.


Despite popular misconceptions, there is nothing natural or inevitable about institutionalisation as a policy choice for older people. A number of countries have begun to move decisively in favour of community living options for older people. At its last summit on age policy (2015), the White House recommended that “long-term care” for the elderly should primarily entail reinvestment in the community to enable community living as a realistic option. Israel has a law on the books since 1988 to provide older people with a legislative right to supports to continue living in their own community. And the Australian Royal Commission on aged care quality has recently called for submissions on alternatives to institutions – a sure sign the policy landscape is shifting. Swedish experience shows that community living for older people is not without its own share of problems in implementation. But, overall, these problems are preferable to congregating older people in institutionalised settings with obvious vulnerabilities to pandemics.

Cost- effectiveness

Unlike the disability context, the “naturalness” of institutions for older people has yet to be fully deconstructed. One of the main arguments for them has to do with cost and effectiveness. However, given the massive amounts of money invested directly and indirectly (tax breaks, capital grants, subsidies), it is not at all clear that such sites are cost-effective.


Comparative experience shows that community healthcare costs can be kept within manageable bounds if the underlying health condition does not deteriorate (as it tends to do in congregated settings). It may well be that new flanking policy measures are needed to make community living work – like the relaxation of labour laws to enable flexible working hours to be able to care for a parent as well as more substantive family supports. This will undoubtedly mean expanding pension rights for carers which has in fact been demanded by the UN treaty body responsible for gender equality (the Convention on the Elimination of all Forms of Discrimination Against Women).


The Taoiseach’s remarks have significant European resonance. One of the Taoiseach’s colleagues – Mairead McGuinness MEP – was central to efforts in 2013 to change the underlying principles of the EU Structural and Investment Funds (ESIF) to ensure that EU taxpayer money would be spent avoiding institutionalisation and developing community living options. She deserves immense credit for this.


Correct and efficient

Popularly understood to apply just to people with disabilities, these new ESIF provisions actually apply to all – including older people. True, there have been setbacks. True, some countries are not going as fast as others. True, some abuse of the rules persists and has to be confronted by litigation if necessary. But the intent – using EU taxpayer money positively to create entirely new possibilities for our citizens – is both morally correct and economically efficient.

The European Commission is now relaxing the rules on funding for social infrastructure and ESIF expenditure across Europe to enable member states respond and recover sustainably. The World Bank announced it is prepared to deploy up to $160 billion (€146 billion) over 15 months in Covid-19 response funding. The European Investment Bank has pledged €5.2 billion for a global response outside the EU. There has never been a better opportunity to make sure that the money goes where it is truly needed: developing services and protecting rights by moving people out of residential facilities into safe, supportive communities immediately.


Consistent with the Taoiseach’s sentiments, and anticipating a new government, Ireland could certainly play a more proactive role in ensuring that ESIF funds play their part in developing community living options for all, including older people. Ireland also hopes to gain a seat on the UN Security Council. We would also encourage Ireland to take a leadership role and help set standards by championing the right to community living for older people in the much-anticipated UN treaty on the rights of older persons. A sustainable recovery requires no less.

Gerard Quinn

Gerard Quinn holds the Wallenberg chair of law at the University of Lund and is a research professor at the University of Leeds. Ann Campbell is co-executive director of Validity, an international NGO seeking to advance the autonomy and deinstitutionalisation rights of people with intellectual and psychosocial disabilities



Covid 19, Uncategorized
Watch Taoiseach Leo Varadkar talk about the impact of the Pandemic on the Late Late Show.

Varadkar suggests that ‘maybe nursing homes are not the right approach and we need to enable people to live at home for longer.’ These comments are a response to the impact the virus is having particularly in larger residential settings.

Click on the picture to watch the clip.


Covid 19, Uncategorized
For the original source see here.

Inclusion Ireland holds very constructive meeting on disability issues with Minister for Health Simon Harris, April 28th

Inclusion Ireland met with Minister for Health, Simon Harris, Minister for Disability Issues, Finian McGrath and head of HSE Disability Service, Dr Cathal Morgan on April 27th to discuss COVID-19 disability issues that people with disabilities and their families had raised with Inclusion Ireland.

The key points from the meeting were:

  • 90% of disability services are COVID-19 free and the other 10% are so far coping with their outbreaks. Sadly, 10 people have passed away due to COVID-19.
  • The Minister is to ask the HPSC to publish disaggregated data to indicate the levels of COVID-19 in disability services.
  • There is equality of access to personal protective equipment (PPE) for disability services.
  • The HSE is to develop a protocol for informing families if their family member lives in a setting where someone has contracted COVID-19.
  • There is equality of access for people with disabilities to health care, including intensive care.
  • The Department of Health and HSE are mindful of the UNCRPD which guarantees equal access to health care.
  • In emergency cases, where a family carer has to enter hospital for treatment, the HSE has developed an emergency care pathway. As all cases are unique, this will be done on a case by case basis as the need arises.
  • The HSE is looking at how it can adapt services to children. Special needs assistants are beginning to contact families to give a remote support option.

Inclusion Ireland CEO, Enda Egan commented on the meeting: “I would like to thank Minister Harris for engaging with Inclusion Ireland, and listening to the concerns of people with intellectual disabilities and their families have in relation to the ongoing COVID-19 pandemic”


Covid 19, Uncategorized

The Centre for Disability Law and Policy at NUI, Galway has prepared a briefing paper on the rights of persons with disabilities in congregated settings within the COVID-19 emergency.

The purpose of this paper is to capture the critical information that may be relevant to Ireland at this time in relation to persons with disabilities residing in congregated settings.

This paper outlines the rights of persons with disabilities resident in congregated settings in Ireland under the UNCRPD. It then looks at reports and practices in other countries of how similar services are responding to the COVID-19 pandemic. It makes recommendations as to how to address core issues which have been identified by disability service providers in Ireland.

This paper is focused on the operation of residential settings. The CDLP acknowledges that persons with disabilities living in the community will also experience significant barriers to the realization of their right to the highest attainable standards of health, the right to live independently and to be treated equally to non-disabled people. Adequate supports must be provided to persons with disabilities who receive support and care from family members.

keep reading


Covid 19, Uncategorized

The Inclusive Living Network, along with other organisations and individuals, has signed the following statement.

Read the Statement online here.

Statement on the Rights of Persons with Disabilities during the COVID-19 crisis, 7th April 2020

We welcome the ongoing work by the National Public Health Emergency Team, the Department of Health, HSE services, Department of Housing, Planning and Local Government; and the Department of Rural and Community Affairs during this pandemic. We are calling on all state actors to adhere to their obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), which Ireland ratified in March 2018. The UNCRPD articles which warrant specific consideration during the current crisis in Ireland are discussed below. The authors recognise the use of the terms ‘disabled people’ by some disability activists in Ireland. However, this paper uses ‘persons with disabilities’ in line with the text of the UNCRPD.

Article 5 enshrines the right to equality and non-discrimination. Emergency measures and legislation enacted during this crisis must ensure that persons with disabilities are not discriminated against in any aspect of their lives. Intersectional discrimination experienced by persons with disabilities during this crisis along race, age, gender, sexuality, refugee and socio-economic identities must also be addressed.

Article 10 obliges the state to protect the right to life of persons with disabilities. Decisions based on the distribution of life-saving resources must not be based on the presence of a disability. The World Medical Association ethical guidance for provision of life-saving treatment must be followed. ‘In selecting the patients who may be saved, the physician should consider only their medical status and predicted response to the treatment and should exclude any other consideration based on non-medical criteria’, (World Medical Association, Statement on medical ethics in the event of disasters, Section 8.3.1,

Article 11 obliges the state to ensure the safety of persons with disabilities in situations of risk, conflict, humanitarian emergencies or natural disasters. States must ensure that laws, policies, and resource allocation measures are carried out in a way that protects persons with disabilities from the risk of infection and death.

Article 19 provides for the right to exercise choice and control over where and with whom to live, to participate in the community on an equal basis as other and to have access to any supports needed to enable them to live independently. Without adequate planning and resources, the current social distancing requirements will disproportionately impact persons with disabilities living in health and social care residential settings.

Article 25 enshrines the right to the highest attainable standards of health for persons with disabilities. Health facilities available to the general public must be equally available and accessible to persons with disabilities.

While the current pandemic is impacting on all members of society The UN Rapporteur on Disability has identified persons with disabilities as vulnerable during this global health pandemic, (UN News, ‘Preventing discrimination against people with disabilities in COVID-19 response We call on the Government to ensure:

• Accurate and up to date information on testing and access to health and public services must be available in a wide variety of languages and accessible formats. Information must be easily accessible on public platforms for individuals and service providers. This includes availability of health passports for persons with diverse communication needs and making information available through assistive technology, Irish Sign Language and Easy to Read formats.

• Adhere to the World Medical Association guidance on equal treatment within triage health services. Healthcare needs, including mental health, which are not related to COVID-19, must continue to be met. Where possible services such as counselling should be conducted remotely.

• Persons with disabilities must be involved in decision making around their own healthcare.

It may be critical for some people who have disabilities to have either paid or unpaid support with them during a hospitalisation as these people would have the ability to best support someone during a hospital stay. Where appropriate persons with disabilities should be supported to recover from any COVID-19 related illness in their own home, on an equal basis with the non-disabled population.

• A coordinated approach must be taken to ensure supports can be provided to families of children with disabilities, including adult children. This includes the provision of education materials and social supports in the home where education, employment and day services have ceased operation during the crisis.

• Person-centered planning should govern the activities of disability service providers to promote the autonomy of the individual and to minimise disruption to routine which could be distressing for some persons with disabilities. Community supports for provision of vital supplies and social connections must be accessible to persons with disabilities.

• Social welfare supports for loss of income must be available to persons with disabilities and recognise any increased costs connected to disability during the pandemic. Remote working technologies should be utilized to ensure continued employment for persons with disabilities where possible.

• Advocacy services must be made available to individuals detained under the soon to be enacted Health (Preservation and Protection and Other Emergency Measures in the Public Interest) Bill 2020. Risk control measures must be in place to ensure no one is subjected to deprivation of liberty without proper legal procedure and safeguards.

• Extend the role of HIQA to risk assess for outbreaks of COVID-19 infection in nursing homes to include other congregated settings.

Signed by:

Amnesty International Ireland, Brothers of Charity Services Ireland, Centre for Disability Law and Policy at NUI Galway, Cosáin CLG, Dara Community Living Kildare, Dermot M.J.Hayes – NDS DSG 5 & Independent Living Network Ireland & Clare Leader Forum, Disability Federation of Ireland, Down Syndrome Ireland, Fiona Anderson, Dr. Fiona Morrissey – Disability Law Researcher, Galway, Fiona Walsh, Inclusion Ireland, Independent Living Movement Ireland, Inclusive Living Network, LEAP Ireland,Maria Walls -PhD Scholar & DSG member, Paul Markey -PhD Hume Scholar, Maynooth University, Psychological Society of Ireland, Recovery Experts by Experience, St. John of God’s CLG.

Please direct any queries to Dr. Áine Sperrin, Centre for Disability Law and Policy:


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