The UN Convention on the rights of people with disabilities means we are all equal.
People with disabilities will now be supported to live in their own homes and to decide things for themselves.
People with disabilities are now moving into their own homes and being helped to live their own lives – but we could be doing this work
The Government needs to provide more money to help us to do this work better.
We need to make sure the person with disability is really involved in planning what should be done and in telling us what we need to do better.
The aim of the United Nations Convention of the Rights of Persons with Disabilities, (UNCRPD) is to ensure that the human rights of citizens with disabilities, the ordinary rights they share with all human beings, are fully and routinely present in their everyday lives. Not really a big ask you might think in the 21st century, but from my experience of doing some support work with disability organisations in Ireland it is in fact a monumental task requiring huge creativity and boldness, some strong nerve and lots of dedicated funding. My suspicion is that though the world of disability has changed with the UN convention, we in Ireland have not really caught up yet. Individually, as citizens with disabilities, or those supporting, as organisations and institutions of the state, I think we are in fast moving waters but not necessarily yet with full clarity in the areas of intention, vision and purpose.
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 that the process of decongregation/deinstitutionalisation 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 deinstitutionalisation/decongregation policy will require informed and evidence-based health planning solutions. 
We have done some preparation work in Ireland with HSE publishing a policy document entitled “Time to Move Away from Congregated Settings” , 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. We are now in the decongregation phase, catching up, moving fast and my experience in this area suggests that each time 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? As a nation do we really have a vision of equality for our citizens with disabilities or are we just being brought kicking and screaming to the table, late but just in time to avoid sanctions? Is our current implementation up to standard or are we settling for ‘good enough’, ‘the best we can do with limited resources’?
Decongregation is a complex process and lack of adequate funding means we are cutting some corners, perhaps not attending to all of the elements involved from a rights-based perspective, nor fully attending to the needs of staff and family as they too struggle to negotiate the change, not just the initial move to a new home but all that is and all that will be required for real implementation of the vision of equality for each and every citizen with a disability. Our very 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. 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 and consistent with the values and vision of the originating organisation.
There is something disconcerting for me about the standards framework being for both children and adults with disabilities, 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, the necessary time and supports to grow into an understanding of the rights-based approach with all its challenging concepts such as social role valorisation with its important but unfortunately precise use of language?
Supporting organisations to do the work
I believe that by now (late 2018), we have in fact achieved a lot in relation to both residential and day services with family forums, change management structures and processes, and training for staff and those in governance on the consequences of our new awareness that people with disabilities are in fact citizens with full and equal rights, entitled to do ordinary things in ordinary places. I am in awe of the energy spent by individuals and the organisations I have worked with in pursuit of this goal of inclusion, and participation by all in our transformation in understanding of what it is to be a disabled citizen in 21st century Ireland. With the existing resources and the pressure of timeframes it is challenging to know how more can be done. Yet I think it behoves us to take a moment, to reflect on what we have been doing and to explore how we might do better in the next phase of the work.
Key areas I believe need urgent attention
- Advocacy / self-advocacy
A rights-based approach suggests that the person with disability is at the heart of the matter and my work in the ID area shows me that this is partially true – with visioning, consent protocols, communication passports, SRV work, and all that is involved in this. Yet of all the areas in need of more adequate funding, I believe the need here is most urgent. Self-advocacy is a goal which needs to be honoured now through the availability of real, meaningful advocacy supports. I have witnessed wonderful advocacy work with individuals, but I can equally bring to mind many more situations where the role of advocacy was not really actualised in our rush to decongregate.
- Unintentionally decongregating into what might become smaller institutions, isolated within or on the edge of communities, or developing community hubs that might bear too much resemblance to traditional day care settings
Bringing into reality the vision of real integration and equality is a huge task, and if we do not give this area of the work the required attention and resources, we will simply be rearranging the deck chairs on the titanic, and will rightly be open to charges in the future of disingenuous action. I hope in years to come we won’t be reaping the rewards of not putting our heart and soul into what it truly takes to allow citizens with disabilities to live lives of inclusion, with the right to live where they wish, with whom they wish and to engage in their local community as they wish. We were very late coming to this table, with very little political will evident; certainly it is not a priority area for either our politicians or for us as citizens, and the dangers of ‘good enough’ to my eyes anyway loom large.
It would be so much better if we were driven internally by our own desire to bring about an equal and fair society for all, but I think this is a level of maturity we have yet to reach as a nation. I am aware however, that there are individuals and organisations fully focused on the goal of real equality, and my hope is that supporting them to model best practice for the rest of us will help with the wider shift in culture required for real implementation of the convention.
I know that funding or rather the lack of adequate funding to do a good job is a key barrier to our being real in our delivery on our obligations under the UN convention. Those of us involved even peripherally in this project are, I think, obligated to both consistently and persistently raise the issue of adequate funding, and to be mindful as we go that we do not store up further injustice to be revisited at a time in the future when questions will be asked regarding what we have done in this period. But I also believe we can do better with what we have. There is much we can do as organisations to align our work closer, with the vision and requirements of the UN convention and it is to this internal work I now turn.
Organisations need now to be working with citizens with disabilities and local communities in ways where the citizen living with the experience of disability takes centre stage in developing more robust approaches to monitoring and evaluating our actions, acknowledging that mistakes will be made and that we can learn from them. We need to habitually take some time with all the stakeholders but again with the person with disability at the centre for real reflective practice on each of our key actions and their short-term impacts. Only when we build this muscle of embedded reflective practice will we have the evidence base for citizens with disabilities to inform policy makers and funders of what is required to meet our obligations in real and meaningful ways.
Are we moving too fast?
One of the key debates at the moment is how best to get the decongregation phase of this rights-based work done – should we get people off congregated sites as fast as possible or would it be better to adopt a slower pace, taking staff and families with us with real and meaningful engagement of our disabled citizens each step of the way? As a process worker informed and shaped by the principles of community development and facilitation, and as a theologian concerned with social justice, my inclination is to say “slow down”, to ensure reflection and equality of participation. As an Irish citizen privileged enough to have journeyed over the years with many activists and groups hungry for this rights-based approach to disability, and more recently having done pieces of work in some – let’s say – ‘very congregated settings’, I say “fire on, get the job done, cannot be done quickly enough”, but still I want to say “but not at any cost”.
A 2014 research project on the organisational experience of delivering on the New Directions framework, which sets out the roadmap for transforming what were traditional day care services to supports for people with disabilities that reflect the shift to the 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.’
As a change manager, I recognise what this report is drawing our attention to – negotiating change with some intentionality will vastly improve the experience for all involved. And so I want to posit a third way – a middle path, if you like, between moving fast at all costs to decongregate, and taking the time to move at a pace that better includes all – the person with disability, family, staff and established organisations, with strong if sometimes unconsciously non-aligned lived cultures.
The Middle Path
‘Future shock is the shattering stress and disorientation that we induce in individuals by subjecting them to too much change in too short a time.’ – Alvin Toffler
In thinking about this middle path, I’m wanting to focus on the resources that organisations might already have that could be brought to bear on better humanising the decongregation and New Directions processes, in order to mitigate against the worst experiences of alienation by many involved – families that feel excluded, staff that carry all sorts of baggage from their previous work and fears about the future, and change managers tasked with time-scaled targets to be met feeling unable to fully embrace the nuance and diversity that sometimes necessitates straying from the agreed path.
Diverting some existing in-house resources to the following tasks will cost organisations in this constrained environment, but the rewards could really help us to do a much better job in the next phase of the work. Getting our brothers and sisters into houses of their own (well, maybe not quite their forever home, but perhaps the first faltering step towards this that many of us have taken, and maybe not necessarily with those with whom they choose to live or even in a place they choose to live – yet) is but a first step in the long process towards ‘ordinary things in ordinary places’. We have much still to do in supporting the emergence of what will hopefully become real meaningful organic community hubs to support the integration and well-being of all. The following suggested actions might be helpful to some organisations, not as a replacement for adequate funding which I believe needs to be fought for all the way, but as an extra layer of resources, in-house and with minimal cost, that might improve the experience of decongregation for all in the next phase.
- Organisational Clarity
- Take a little time out to identify vision, values, and strategic goals underpinning the work of this period, maybe led by one senior manager gathering representatives from all layers in the organisation, from persons supported to governance and families or circles of support as relevant. Keep it simple and post it everywhere – all energy is then better focused.
- Culture and Leadership
- Traditional social care/disability organisations tend to be hierarchical in structure. In a fast change environment, our go-to place can sometimes be to an extreme form of this traditional management model, usually resulting in a very strong dysfunctional ‘them and us’ culture which dissipates energy and makes progress in any area so much more difficult. Appoint one senior person to explore other models of leadership – maybe the flat model of management, that will surely be required if the decongregation process is to be successful. Identify a model of leadership to embrace for this phase – five key points that guide the work – post it everywhere and hold each other accountable to it.
- Listening as an ongoing process
(This strategy may need a senior management lead with involvement by all in leadership).
A formal Listening Exercise:
- With individual’s staff members and teams focused on building staff trust and engagement in the process of change, and identifying key issues of concern for senior management and governance to address, while also reflecting back to the staff body areas of stuckness and resistance not in keeping with the agreed organisational clarity;
- With persons supported focused on developing practical strategies for accountability to each individual and inclusion of their input and feedback on the process as it progresses, and developing habitual advocacy as normative within a rights-based approach to disability;
- With family members / circles of support allowing space for their real experience and concerns and reflecting back how these have been heard.
Key to an effective listening exercise is bringing no agenda to the table, allowing the person to speak freely without consequence, and then reflecting on the key issues emerging and responding to the whole organisation – typically by circulating a feedback note to all and providing opportunities for group reflection on same.
Also key to effective listening is communication – communicate, communicate, communicate – even the perception of a small elite group working / decision-making behind closed doors is detrimental to progress in a fast change environment.
- Celebrating Success / Learning and Adapting
- Develop and value strategies for tracking and celebrating success –both in the internal and external environments, through storytelling, newsletters and videos, and small local celebrations marking positive change as it occurs;
- Senior management facilitation of whole-organisation café conversations to address areas of stuckness, resistance to change and overwhelm, and to identify strengths-based, creative responses, devolving responsibility then for actions to those who will undoubtedly step up if given the opportunity,
- Establish a small group to develop staff well-being actions – perhaps not yet a programme such as IBEC’s Keep Well Mark if resources and energy are very tight, but even in a fast change process it is possible to foster some small actions to acknowledge the stressful environment and build resilience and strategies for self-care as well as care for our colleagues – a half-hour spent on Google will generate some simple ideas for evidence-based practices that will reap rewards if actioned.
Wishing us all well on the journey and daring to dream that one day we will look back and realise the dream has become real.
“Keep some room in your heart for the unimaginable.” – Mary Oliver
 For a potted history of disability in Ireland see www.mindfulfacilitation.com/facilitation/consultancy-human-care-organisations/story-of-disability-in-ireland/
 “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.
 Time to move on from congregated settings – A strategy for Social Inclusion, HSE 2011
 National Standards for Residential Services for Children and Adults with Disabilities, 2013
 Social Role Valorization https://www.socialrolevalorization.com/en/srv-theory
 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. .
 Bryan, Derek (2014) From Institution to Integration: The perspectives and experiences of disability sector staff in the transition to New Directions. Dublin, Masters Dissertation, Dublin Institute of Technology