Potted History of Disability in Ireland

Potted history of disability in Ireland

We are a caring society

The traditional model of care for people living with disabilities in Ireland as elsewhere was the medical model which saw people living their lives in institutions or congregated settings where the focus was on caring for them so that their primary experience might be one of dependence and total reliance on the full support of clinical and non-clinical staff. Many of our disability organisations emerged from this model which may still even unconsciously inform the culture within which the new work of decongregation is taking place.

The small persistent voice of resistance to being ‘cared for’

The social model of disability emerged from among those living with disabilities from their  experience of the traditional medical model neither reflecting their lived experience nor  helping them to develop a more inclusive self determining way of living. The social model suggests that disability is caused by the way society is organised, rather than by the individual’s impairment or difference. It looks at ways of removing barriers that restrict life choices for disabled people. The belief is that with barriers removed, disabled people can become independent and equal in society, with choice and control over their own lives.

 

The emerging rights model of disability

 

The Independent Living Movement which has roots in the black civil rights struggle   evolved in the United States in the 1970s as a response by disabled people to their historic experience of exclusion and discrimination.  In Ireland, Independent Living has been  advanced by the Centre for Independent Living Network since.[1] During this period a report by the Disability Federation of Ireland/Citizens Information Board (DFI/CIB)[2] pointed to a need for new thinking which would address the accommodation and related support needs of people with disabilities in the context of ‘social inclusiveness, equality of access and the provision of accessible and integrated living environments’. This approach marks a significant shift from earlier perspectives which viewed the accommodation needs of people with disabilities as being met primarily in the context of “special needs housing”.

The Game Changer  – the first Human Rights Treaty of the 21st century

When 164 states and the EU signed United Nations Convention of the Rights of Persons with Disabilities, (Ireland was among the first to sign) it  heralded a light bulb moment with a new global recognition of an always existing reality that disabled citizens have a right to  opportunity to equality, having independence and choice, with the ability to participate in their wider communities. The stated purpose of the convention is ‘to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity ‘, and as nations ratify, it acts as a target for them to aim for in granting the always existing (by virtue of their humanity)  right to equal status as citizens with disabilities. On March 30th, 2007,  the Irish minister for justice Michael McDowell signed the UNCRPD on behalf of the Irish government, described it as ‘a blueprint for a significant improvement’ in the lives of people with disabilities  and promised that Ireland would ratify it ‘as soon as possible’.

Not a very urgent matter in Ireland though

And so began ten years of repeated promises that Ireland would ‘ratify as soon as possible’ though each successive government seemed to kick the can further down the road so that over the years our failure to ratify became something of an international  badge of shame.

 

In late 2017 journalist Tom Clonan a gave voice to the frustration of activists about our failure to ratify:[3]

Personally, I’ve had enough’ he wrote. ‘ Would Irish men and women tolerate a State that detained citizens on aircraft because of their sexuality or sexual orientation? Would Irish citizens tolerate a system that demanded 24 hours notice of travel of the LGBTI community? A State that confined over a thousand LGBTI citizens to an Irish-style gulag archipelago of nursing homes? No. So, why impose this on the so- called ‘disabled?

Finally ratification in Ireland – the dawn of a new era?

Thursday 19th April 2018 – Ireland officially commenced implementation of United Nations Convention on the Rights of Persons with a Disability (UN CRPD).

The aim of this Convention is to ensure that the human rights of citizens with disabilities, rights shared by all people, are fully and routinely present in their everyday lives. These include obvious areas such as employment, education, free and easy movement, public transport, housing, health and social services and income supports. There are other important issues for people with disabilities such as freedom of choice, respecting will and preference, bodily autonomy and dignity, which must also be addressed[4].Senator John Dolan, CEO of DFI said people with disabilities (would) expect to see the equality promised by the CRPD now become real. The Convention’s significance he said “lies in its insistence on the equal rights and equal treatment of people with disabilities, giving nothing extra – there are no adds-on or special clauses for people with disabilities. There is just the plain insistence on equality, the benefits of which will only be experienced if the implementation phase is fully and effectively implemented.

The journey to Decongregation

My own involvement in this work is peripheral, primarily in supporting organisations going through change management processes necessary for decongregation. We know from experience in other countries [5] that the process of decongregation / deinstitutionalization  requires the setting up of organisations, processes and frameworks, and staff to implement, monitor and evaluate implementation and that for Ireland, and any other developed country, the successful and timely implementation of a deinstitutionalization/decongregation policy will require informed and evidence-based health planning solutions. [6]

We have done some preperation work in Ireland  with HSE  publishing a policy document entitled “Time to Move Away from Congregated Settings”[7], followed by dedicated healthcare standards and guidelines for residential services that provide care to adults with disabilities that comply with the stipulations of the UN Convention.[8] We are now in the decongregation phase, catching up, moving fast and my experience of some little work in this area suggests that mostly when a disabled citizen has the opportunity to move into his or her own home with all that involves it is a revelation, like the difference between night and day which even the most concerned family member or resistant staff member celebrates. So there is no question that we are moving in the right direction. But is that enough? My experience says no – that rather that this is a good time to ask some questions.

Decongregation is a complex process and lack of adequate funding might mean we are cutting some corners, perhaps not attending to all of the elements of decongregation from a rights based perspective, or fully attending to the needs of staff and family as they too struggle to negotiate the change.  Our language is still confused and confusing. The Health Partnership for example in drawing attention to what needs to be done in preparing for decongregation uses terminology such as patient and resident while describing new models of care.[9] They are not alone, it is challenging to embrace such a huge cultural shift and this is negotiated on a day to day basis in our congregated settings with our struggles to find language that is both reflective of the new reality yet often still embedded in structures and cultures from previous understandings of disability.

There is something disconcerting for me about the standards framework being for both disabled children and adults as this seems to echo earlier times in the social and church history in Ireland when in both Canon Law and the Irish Constitution women and children were dealt with as one, as though women were not quite adult and independent. We now know that this was wrong. Is it unfair to ask why in the era of finally accepting disabled citizens as full citizens with equal rights we have a national standards framework for Residential Services for Children and Adults with Disabilities? Also have we done all that we can to allow staff, families, organisations embedded in cultures of previous ‘models of care’ time to grow into an understanding of the rights based approach with challenging concepts such as social role valourization with its important but unfortunately precise and technical  language?[10]

A 2014 research project on organisational experience of delivering on the New Directions[11] framework which sets out the roadmap for transforming what were traditional day care services to supports for disabled citizens that reflects the shift to rights based approach  found the following :

Managers reflected on organisational culture, change management and the leadership now needed whilst staff considered changes to their roles, the challenges and the training now required. Identifying and coordinating supports within the community emerged under role changes, challenges and the skills now needed…… The importance of communication with people with intellectual disabilities, their families, staff members and the wider community in relation to New Directions emerged throughout this study. The concept of support for all involved in New Directions was also a recurring theme in this research.’

[1] http://dublincil.org/network-council.asp

[2] //www.nuigalway.ie/media/housinglawrightsandpolicy/nationalpolicy/disability/The-Right-Living-Space-Housing-and-Accommodation-Needs-of-People-with-Disabilities- 2007

 

[3] http://www.thejournal.ie/factfind-un-crpd-3595556-Sep2017/

[4] http://www.senatorjohndolan.ie/news-media/57-thursday-19th-april-2018-ireland-officially-commences-implementation-of-united-nations-convention-on-the-rights-of-persons-with-a-disability-un-crpd

[5] “Bold and innovative policy decisions are not self-executing” as noted by Jim Mansell and Kent

Ericsson in their 1996 study on deinstitutionalisation in Scandinavia, Britain, and the USA.

[6] https://www.healthpartnership.ie/news/health-planning-decongregation

[7] Time to move on from congregated settings – A strategy for Social Inclusion, HSE 2011

[8] National Standards for Residential Services for Children and Adults with Disabilities, 2013

[9] https://www.healthpartnership.ie/news/health-planning-decongregation

[10] Social Role Valorization  https://www.socialrolevalorization.com/en/srv-theory

 

[11] In November 2015, the HSE published Interim Standards for New Directions Services and Supports for Adults with Disabilities requiring service providers and key stakeholders to involve people with disabilities in the design, delivery, monitoring and evaluation of the services and supports provided. .