Sunday, August 20, 2017
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It’s April, and the overcoat is off (not the jacket, just the overcoat, thanks). Welcome to the Leadership issue of Frontline.

More and more, people are taking to public locations and services to make their voice heard where it matters. Joanne O’Riordan’s eloquent and lucid highlighting of life for a person living with disability as we approach the 3rd decade of the 21st Century is well known. The resounding success of her campaign’s Ratify the UNCRPD demonstration on the 30th March 2017 will, in the short term at least, be the fact that the strong, articulate voice of people with disabilities is taking its rightful place, at the vanguard of the drive for equality of rights and services. The torch so vigorously carried by such warriors as Martin Naughton, his tireless team and countless others over the years will not be quenched any time soon.

We can only hope right now that the tide of opinion rises similarly in the corridors of power to bring meaningful change in the provision of directed, individualised services for those people who need it to realise an active, fulfilled life.

This should not result in (as is feared by many who need services for themselves or their loved ones with disabilities) the reduction in existing services (e.g. congregate setting services) in order to provide for individualised services which are viewed as being more expensive to deliver. That may be where the real pressure needs to be applied for the people who manage the national purse.

Leadership

So, it’s April. The Sun is out, the trees and bushes are budding, birds are nesting and you can hear it. The daffodils have taken on veteran status by this time of year. They took the lead in early March, you see, and Spring is following that example by turning up in full bloom. By mid-May, we will be once again in the midst of the verdant flush of the Irish Summer. If last year is anything to go by, our 40 rich shades of green should be even lusher this time around.

Leadership that directly improves the lives and living conditions of people with disabilities has never been in greater demand than in early 2017. And never has it been in better supply than in Irish Intellectual Disability Services. The difference now is that the empowerment of people in general to take an active role in their own self-determination has brought injustice and particular needs into focus. Where improvements are needed for people with disabilities, it’s not just their family members, friends and representatives that are trumpeting their cause – they are doing it for themselves.

This issue of Frontline Magazine Ireland will examine the nature of leadership, the necessity of making leadership work for service users, and the power of people with disabilities advocating for their own services and rights. We’ll see the benefit of people in politics being in more direct contact with disabilities themselves, and the simple yet positive potential of complaint! The need for modern leadership to provide operational plans, achievable targets and systems governance to effect the best outcomes for people dealing with disability in their daily lives will be detailed. We’ll reflect on the ability of the jurisdiction of the courts system to influence the basic freedoms available to all people in a description of one particular case, while the significance of the remembrance ritual for all people is the subject of a comprehensive item.

Above all, this April, let’s Spring Forward – there will be plenty of time to Fall Back later in the year.

Author Bio

JeromeJerome Corby, Copy Editor, Frontline Magazine Ireland.

Brendan Broderick draws distinctions between the visionary perspective of leadership, and the implementation aspect, between the family's and the service's viewpoints, and the dynamics of culture vs those of strategy...

  • This paper focuses on how to make good leadership happen.
  • Leadership is to be found at all levels, not just in people with leadership roles.
  • There is evidence the Health Sector has the potential for healthy change in some areas but not in others.

Reference to leadership increasingly arises in the context of managing change.  The focus in this paper is primarily on the implementation aspect of leadership. There is also of course the visionary, identifying-new-horizons aspect of leadership. However, at this point in the evolution of intellectual disability services in Ireland, there is no dearth of vision per se. The hallmarks of an ambitious and desirable future for citizens with an intellectual disability are well profiled – although much remains to be done, to deepen the understanding of self-direction; inclusion; the need to invest in building opportunity-rich roles, as opposed to focusing on activity schedules; and what constitutes family-centred practice as opposed to clinician-centred practice. Effective and faithful implementation of the main policy objectives is proving elusive: “springing” people from congregate care settings to build the foundations of (supported) self-directed, inclusive lives; developing models of individualised rather than group supports.

Leadership as action-oriented implementation involves doing things differently – interrogating embedded assumptions, innovating new responses, modelling new levels of responsiveness and seriousness of intent to address core purpose. Doing whatever it takes to land what is needed is a critical expression of leadership. A preoccupation with outcomes, goals, and delivery is its hallmark. The contrast is with those who are satisfied going through the motions of process (Might the appetite for elaborating process chains be a way of minimising the threat to the status quo, by introducing a focus on plausible, publicly-justifiable, long-fingering activity rather than effective action?).

 

Discussion of leadership often defaults to a focus on individuals in leadership roles. The assumption that leadership is all about “the person at the top” is strongly embedded. Certainly there are readily identifiable charismatic leaders who head up organisations. There are also effective heads of organisations that deploy more low-profile styles of projecting purpose and seriousness of intent. The comforting reality is that leadership activity and energy are to be found at all levels.  While the person at the top does not need to be the source of all significant leadership ideas and activity, it is critical that he or she has the sensors to recognise leadership initiative in action, and the commitment and personal capacity to validate and safeguard organic expressions of leadership.

Leadership and change are often seen as best secured through command-and-control approaches, as exemplified in the current orientation to governance within the Irish health sector. The tendency seems to be towards a separation of powers, where the board is at the top of the pyramid and takes responsibility for setting direction, strategic objectives and the policy context, while the rest of the organisation prepares operational plans, budgets, and audit cycles to ensure that the organisation is on track. Effective boards are viewed as those who are in control of what is happening within the organisation. Compliance, order, predictability and control are prized over any other features. Our organisation has recently been the subject of a governance review, the focus of which was exclusively on “the control environment”.

Compliance with public sector pay, procurement processes, and internal audit was the near-exclusive preoccupation. When asked if the organisation’s record of progressing health-sector policy objectives would form part of the review, the response was that this was a marginal consideration and need not feature. Within this governance-as-compliance worldview, curiosity, courage and creativity are deemed superfluous, perhaps aberrant. Arguably this trinity of attributes lies at the core of effective leadership. Any paradigm of governance, which fails to recognise their centrality, must inevitably sponsor a hollowed-out form of organisational performance.

If leadership energies are to be catalysed and harnessed in this sector, we need a fit-for-purpose model of governance, one that places performance, not conformance, at its centre. Might we have mis-applied a model of governance that fits, where the core purpose is to optimise the manufacture of standardised products to a sphere whose core purpose entails the development of individually-tailored (i.e. non-standardised) responses within a context of personal relationship? Perhaps the non-recognition of the distinction between complicated (where precision and standardisation of performance is critical, e.g. intensive care medicine, aeronautics), and complex environments (where non-standardised performance drawing on insight and judgement is key), lies at the heart of this confusion.

Alternative models of governance are available (e.g. Sable and Seitlin’s experimentalist governance) which, if applied in this sector, could release and potentiate leadership energies and significantly contribute to closing the policy-implementation gap.   The cardinal features of this approach are:

  1. The centre sets broad provisional framework goals and local units are allowed discretion to pursue these goals in their own way (rather than being enjoined to pursue precisely-defined goals in lock-step compliance with prescribed process flows);
  2. As a condition of the autonomy given to them, local units must report on their performance, participate in peer review and take corrective actions (incorporating learning from higher-performing peers).

The approach is underpinned by the view that fixed rules written by a hierarchical authority become obsolete too soon to be enforceable on the ground.

Effective leaders know that culture eats strategy for breakfast – and that culture is what takes root, grows, and flourishes in the informal spaces and channels.  Effective leaders intentionally work these channels.  They do not naively place their trust and confidence in formal structures, procedures, or communications.   They recognise that the echoing and circulatory dynamics within the informal zone are more powerful and compelling than official declarations and centrepiece events.  Delivering significant change and re-focussing of core purpose in complex environments (ones which can only be successfully navigated drawing on insight and judgement) have to contend with strong systems dynamics.   People working within the system need to “get it”, i.e. the nature and value of what it is that the leader is trying to land.   When people “get it” the formidable braking power of resistance begins to slacken and release. New and powerful energies are activated. Progress accelerates, moving from slow linear advance to step change.

Effective leaders know that these kinds of change dynamics are not brought into play by perfecting the separate components of the organisation. A combination of perfecting procurement processes, finessing one’s complaints procedure, and enhancing compliance levels with audit cycles is unlikely to add up to any significant breakthrough in respect of vision or core purpose! Effective leaders do not invest in rationalist but illusory beliefs that the best way to optimise the whole is to optimise the individual parts. They recognise that an optimising-the-parts mindset can readily sub-optimise the performance of the whole, that the focus needs to be on optimising the relationships between the parts.  Again, informal channels and informal modes of engagement are the most effective and efficient approaches for promoting “get it” buy-in. Informal should not be read as casual or loose. Informal modes of engagement can be deeply intentional.

Attributes which characterise the intellectual disability service landscape in Ireland, are:

  1. A stable workforce, i.e. low “churn” of employees. Long-term, long-haul relationships between local staff and managers are a salient feature;
  2. Public sector-type employment contracts. There is a strong legacy of social partnership ethos in the management of health services – arguably employee rights are more strongly entrenched in law and in practice than those of service users or their families;
  3. A weak orientation to and appetite for individual performance management.

Name-checking these features should be read as neither endorsement nor criticism. The intention is to differentiate this environment from more short-term, private sector-type, “competitive” employment contexts. Leadership and change models being recommended for application in this sector need to be ecology-proofed before being introduced. “Kick-ass”, commando-style leaders of the heroic ilk are likely to find that this habitat is not compatible with their long-term sustainability. Something more subtle, sophisticated and adapted is required. This latter statement should not be read as a pessimist’s charter, however. When one looks across the landscape of intellectual disability services, one finds a broad range of performance. Significant leadership and change is being realised in some parts of the landscape, with little indication of engagement or delivery in other parts. This evidence-base supports the proposition that even this highly-protected environment can accommodate significant leadership and change initiatives. The key to replicating and extending better performance is to harvest and apply the environment-specific learning from available positive exemplars.

Author Bio

Brendan BroderickBrendan Broderick is CEO of the Muiriosa Foundation, Moore Abbey, Monasterevin, Co Kildare.

  • In this article, John Dolan outlines some examples of how the policies and actions of Government are not doing enough to improve the lives of people with disabilities.
  • He suggests that this is because of a lack of leadership on these issues from the head of Government, the Taoiseach.
  • He says that the Taoiseach must lead the Government to include disability issues in all decisions and to invest enough money and resources. In particular he must lead the way in preparations for Budget 2018.

February’s CSO figures brought bad news for people with disabilities.[1] It showed that while poverty levels are starting to improve generally in Ireland, they are actually getting worse for people with disabilities. This is despite the appointment of a Minister of State with special responsibility for people with disabilities in 2016 and the preparations for ratification of the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD). This reinforces that leadership on disability issues must come from the very top. The Taoiseach, as head of the Government, must prioritise the needs of people with disabilities and instruct his Ministers, and the civil servants within the Departments, to dedicate and invest funding and resources that will support people with disabilities to live in dignity, and to live and participate equally in their communities. Preparations must be made now for a fully disability-inclusive Budget for 2018.

What is Leadership on Disability Matters at political and decision-making level?

Leadership on disability issues means understanding, respecting and identifying disability matters as being human rights issues. It means including disability issues and voices in all mainstream policies, decisions and initiatives. And it means investing enough money and resources to implement these.  Logical and straightforward.

Is there Leadership on Disability Matters?

Progress has been made and some good intentions have been shown, but it has not resulted in real improvements in the lives of people with disabilities. An Taoiseach must show leadership by committing to fund disability inclusion in all Government plans and decisions, in line with the UN CRPD and by demanding that Ministers and Departments coordinate and work together to ensure a coherent approach.

The appointment of Minister Finian McGrath as Minister of State with special responsibility for disability issues (who operates at cabinet level), showed signs of Government ambition and commitment to improving the lives of people with disabilities. It had the potential to place disability issues at the heart of Government decision-making, after Disability Federation of Ireland (‘DFI’) led the campaign in the 2016 general election for just such an appointment. But while no-one can doubt the intentions of Minister McGrath, his capacity to mainstream disability issues and to effect real change must be limited by an Taoiseach’s lack of leadership on including people with disabilities in Irish society. This is demonstrated by the lack of effective policies and incoherence of approaches across Government initiatives.

Lack of leadership shown by inaction, incoherence, and ineffective policies

  • Four out of 10 of the published Departmental Statements of Strategy make no explicit reference to people with disabilities or the UN CRPD. These include the Departments of An Taoiseach,[2] of Jobs, Enterprise and Innovation,[3] of Communications, Energy and Natural Resources[4] and of Foreign Affairs and Trade.[5]

Compare this with the strategies for both the Department of Justice and Equality and the Department of Health, which both made strong, human rights-based references to disability matters.[6] Statements of Strategy set out the priorities for each Department, and guide the Department’s expenditure of finances and resources.

  • The Programme for Government published in May 2016 specifically aimed to ratify the UN CRPD by the end of 2016.

2016 has come and gone, and we are still awaiting ratification.

  • CSO statistics from this February[7] show that poverty levels are getting worse amongst the disabled population, though generally, they are improving for the wider population. Unfortunately, this is no surprise.

At the time of drafting Budget 2017, the wider economy was showing signs of recovery.[8] But this was not the case for people with disabilities, whose circumstances became increasingly worse since 2008. Disabled people were one of the groups at highest risk of poverty,[9] with less than half the labour participation rate of the general population,[10] and individually facing extra weekly costs of up to €276 per week due to their disabilities.[11] The DFI campaigned hard in the lead up to Budget 2017 to make sure that people with disabilities were not left behind in the recovery. Nonetheless:

  1. In Budget 2017 (due to take effect from March 1st 2018), people on the Disability Allowance received the same €5 increase in payment as social welfare recipients. This failed to provide for the particularly difficult circumstances and extra costs which disabled people experience.
  2. Fergus Finlay, chair of the Comprehensive Employment Strategy (CES) for People with Disabilities, was asked at the Make it Work: Employment and People with Disabilities conference, “How many people with disabilities have been directly employed as a result of the CES? His response, “The honest answer is none.”
  • There is a serious lack of appropriate, accessible housing for people with disabilities. But a new Universal Design initiative by the Department of Housing was launched solely in the context of addressing housing for older persons.[12] This is despite the fact that the definition of Universal Design is set out in the National Disability Authority Act 1999,[13] as providing environments, including buildings, which are accessible to “persons of any age or size or having any particular physical, sensory, mental health or intellectual ability or disability”. And despite the creation of the Centre for Excellence in Universal Design within the National Disability Authority.[14]
  • Budget 2017 did bring a very significant increase in the funding for Housing Adaptation Grants. This is an important way to improve the accessibility of accommodation for people with disabilities. But in order to benefit from this, a person with disabilities or their family members would have to own their own property, or a landlord would have to be willing to adapt their property for a tenant.

Given the level of poverty amongst people with disabilities, in reality this will not be of any use to many people with disabilities, who are not in a position to own their own home. It will be of little use to those who have to either compete for accommodation in the private rental accommodation market, which is in crisis, or wait years on the social housing waiting list.

  • The Government reiterated in the Programme for Government[15] that de-congregation is a key priority and this was referenced again in new Rebuilding Ireland Strategy.[16] But, at the envisaged rate of de-congregation of approximately 150 to 180 per year, it would take another 15 years before everyone is relocated to housing in the community. The Rebuilding Ireland Strategy did not identify the then almost 4,000 people with disabilities who were on the social housing waiting list since 2013. Furthermore, there are over 1000 people with disabilities, under the age of 65, inappropriately living in nursing homes for older people,[17] due to the lack of accessible housing and communities and proper supports.

These are just some examples of the problems, inactions and inconsistencies that people with disabilities face, due to a lack of strong leadership from the very top of Government – An Taoiseach.

Budget 2018 – time for a fresh start

The Department of Justice and Equality’s 2017 Statement of Strategy says that:

‘The Department of Justice and Equality has overall responsibility for public policy and administration in respect of justice, national security, equality, disability and human rights issues.’[18]

And, to the credit of the Ministers Harris, and Fitzgerald and Ministers of State, McGrath and McEntee, this approach is reflected and reinforced clearly in the Department of Health’s Statement of Strategy, which set an objective to:

Support the full and effective participation of people with disabilities in society on an equal basis with others, in accordance with the United Nations Convention on the Rights of Persons with Disabilities.’[19]

These represent a significant shift in how disability issues are to be considered and addressed. And they will be crucial tools to ensuring that funding, resources and initiatives under their Departments are allocated in a manner which have a real and positive human rights-based impact on the lives of people with disabilities.

So let’s accept that Government is sincere in its intent to ensure full inclusion and equal participation for people with disabilities. But these tools can only be utilised if disability inclusion is properly provided for across the different Departments in Budget 2018. Such action would prove that Ireland is systematically getting on with a programme to liberate people with disabilities, in anticipation of ratifying the UN CRPD. And this decision must ultimately be led by An Taoiseach.

[1]Survey on Income and Living Conditions figures: http://www.cso.ie/en/releasesandpublications/er/silc/surveyonincomeandlivingconditions2015/ (“SILC”)

[2]http://www.taoiseach.gov.ie/eng/Publications/Publications_2017/Department_of_the_Taoiseach_Statement_of_Strategy_2016_-2019.pdf

[3] https://www.djei.ie/en/Publications/Publication-files/Statement-of-Strategy-2016-2019.pdf

[4] http://www.dccae.gov.ie/SiteCollectionDocuments/About-Us/Statement%20of%20Strategy/Statement%20of%20Strategy%202016-2019.pdf

[5] https://www.dfa.ie/media/dfa/alldfawebsitemedia/aboutus/whatwedo/Statement-of-Strategy-2016-2019.pdf

[6] http://www.justice.ie/en/JELR/Department%20of%20Justice%20and%20Equality%20Strategy%20Statement%202016-2019.pdf/Files/Department%20of%20Justice%20and%20Equality%20Strategy%20Statement%202016-2019.pdf and http://health.gov.ie/wp-content/uploads/2016/12/DoH-SoS-2016-2019-Final-En.pdf

[7] SILC

[8] The ESRI’s Initial forecasts for 2017 indicated that Ireland’s GDP would grow by 4.2%. [ESRI, Quarterly Economic Commentary, Summer 2016, 21 June 2016.]. The ESRI also forecast that unemployment in Ireland will fall to 7.6% by the end of 2016 and 6.5% by the end of 2017. [ESRI, Quarterly Economic Commentary, Summer 2016, 21 June 2016.]. A senior Government Minister had confirmed that by the end of 2017 the country will “not be borrowing a cent.” [Comments by Richard Bruton TD, Irish Examiner, 5 February 2016.]

[9] An ‘at risk of poverty’ rate of 22.8%, a deprivation rate of 51.3% and a consistent poverty rate of 13.2%. [CSO (2015) Survey on Income and Living conditions 2014.]

[10] Persons with a disability in the labour force had a participation rate of 30%, less than half that for the population in general. [Census 2011. Profile 8: Our Bill of Health.]

[11] Cullinan, John (NUIG) / Lyons, Seán (2014), ‘The Private Economic Cost of Disability’ Table 4.2 ESRI

[12]Homes for Smart Ageing Universal Design Challenge, http://rebuildingireland.ie/news/smart-ageing-universal-design-challenge/

[13] Article 19A, as inserted by Article 52 of the Disability Act 2005,

[14] Article 19B of the National Disability Authority Act 1999 as inserted by Article 52 of the Disability Act 2005

[15] p. 72, http://www.taoiseach.gov.ie/eng/Work_Of_The_Department/Programme_for_Government/A_Programme_for_a_Partnership_Government.pdf

[16] p. 55, http://rebuildingireland.ie/Rebuilding%20Ireland_Action%20Plan.pdf

[17] Per HSE data. In particular, as of August 2015,  1,047 people under the age of 65 are in receipt of NHSS funding (i.e. are in nursing homes)

[18] p. 6, http://www.justice.ie/en/JELR/Department%20of%20Justice%20and%20Equality%20Strategy%20Statement%202016-2019.pdf/Files/Department%20of%20Justice%20and%20Equality%20Strategy%20Statement%202016-2019.pdf

[19] p. 7, http://health.gov.ie/wp-content/uploads/2016/12/DoH-SoS-2016-2019-Final-En.pdf

Author Bio

John DolanJohn Dolan is Chief Executive Officer of The Disability Federation of Ireland, and in 2016 was elected to Seanad Éireann.

  • Ireland has adopted a policy in support of individualisation
  • Interested service providers and people with disabilities and families have begun work on it
  • Government policy is not keeping up with this work
  • Operational plans and targets and systems governance arrangements are needed
  • These would enable real individualised options for people with disabilities
  • It is now time for the decision to get down to business.

The current policy and programmatic environment in Ireland is transitional, as Ireland begins preparations for a major shift away from congregate service models towards more individualised and socially inclusive options for lifestyle and other supports for persons with disabilities. Some of that shift, in the form of an ongoing systematic transformation of service models, has already taken place in a relatively small number of Irish agencies.

However, the bulk of change has focused on selected individual changes in support and lifestyle, as is reflected in the “Next Steps” accounts published by the National Federation of Voluntary Bodies. Even so, the vast majority of services and service settings are largely congregate in nature, and will likely remain so for at least a matter of decades. Leadership is needed to provide a clear operational pathway towards their replacement with the desired individualised options.

Under present conditions, even the occasional replacement of congregate models will likely follow the path of the creation of mini-institutional models to replace the larger congregate settings, thereby postponing for possibly a generation, any sense of widespread access to individualised options called for by recent policy. A new pattern of creating dispersed but smaller congregate models will divert and diffuse leadership energies, further delaying widespread individualisation. It would be much better to simply place an indefinite hold on the growth of new congregate options, so that always-scarce leadership capacity can be more exclusively focused on generating individualised options.

 

Though there are discussions currently underway to pave the way for some form of formal individualised funding system to potentially be created, it is not clear at this juncture whether that as-yet undefined system will be sufficiently broad-based enough to bring into being large numbers of self-directing individual options. Such an individualised funding system, of a substantial enough scale, would in turn require that the means to pay for it would have to be decisively resolved.

There are typically two routes to such an expansion of Individualised funding. The first would be to allocate new monies exclusively for individual funding, and the second would be to reallocate the funding for congregate models to the exclusive use of these monies for solely individualised supports. Both approaches could be used, but the generation of “new” monies to support solely individualised options would, in all likelihood, be hugely constrained by the State’s financial ability to set aside such monies for other than pilot-scale demonstration projects. However, a 1% set-aside added over a decade would immediately add approximately 10% to individual options alone. In all likelihood, Irish agencies that favour the continuance of their congregate models would strongly resist any increase in absolute funding directed solely to individualised options. However, there are now enough agencies interested in expanding their individual options to generate considerable momentum and scale, particularly over a decade.

 

From the experience of other international jurisdictions, it can be assumed that there are sufficient funds already in place in Irish congregate service models to pay for the sizable expansion of individualised options in Ireland, without the need for a separate “new“ funding stream for individualised options. Although, such a dedicated stream would be very helpful in developing the core of the initial growth of the individualised system sought by progressive interests in Irish society.

However, several obstacles requiring decisive leadership need to be engaged and resolved. The first is the absence of governmental (as opposed to solely HSE) targets for a planned phase-down of the quite massive inventory of now very dated Irish congregate models, including a quite sizable and growing number of mini-institutional settings. Without such targets being set and met, there is no realistic hope that funds for individualised options will become available in significant enough scale to shift the balance of the system. Nor will direct practice advance, given that the opportunities to learn and develop needed capacity will be much too few.

The second key obstacle is the current restricted capacity of Irish agencies to transform their service models from congregate to individualised ones. While there is a decided willingness amongst many of these agencies to pursue such objectives, the track record “on the ground” with accomplishing such completed service model transformations is quite limited. This lack of performance capacity can be addressed developmentally, but should it not be engaged effectively, this will most certainly delay for many years the emergence of widespread new opportunities for individualised options to become reliably available. However, we can overcome even this limitation, if there are targeted initiatives in each interested agency to become more proficient, with the process of converting congregate resources to individualised ones.

 

At present Ireland has, at the level of policy, declared that its future must involve a decided growth in self-directed and socially inclusive individualised options. This intention is genuine, but at least for the moment, it is not accompanied by a feasible operational plan from the state that would generate these outcomes. Typically, such operational plans are multi-year, i.e. 5- to 10-year plans that involve incremental annual system change targets, such that congregate models decline and individualised options proportionately replace them. These targets would need to be defined nationally in cooperation with the sector and then translated into annual regional and “agency by agency” work and funding plans. At the same time, it is not realistic to expect that the HSE can readily lead a transformation of this long-term kind, as its primary experience base has been with funding congregate models and not with creating individualised alternatives.

This lack of experience, and possibly the will to champion such difficult changes, given the already sizable and pressured workload of the HSE, suggests that a different approach to systems governance may be needed at the overall governmental level, rather than in the HSE. This might ensure sufficient political commitment to launch and sustain a comparatively long-term transformation, of the kind implied in the creation of widespread socially inclusive and self-directed individualised options as the core of the system of support for people with disabilities. Such a new governance entity should emphasise the presence of leadership from people with disabilities, their families, progressive professionals and agencies with actual experience of gradually turning worthy but challenging aims into reality. However, the state must do its part by putting in place the structural and policy commitments that can enable this job to progress to completion.

Ideally, such governance should be supported by a multi-party political agreement. This could ensure that the Irish State is held politically accountable for the performance of this new governance and mission, rather than saddling the HSE with more responsibilities without the resources, political will and human resources to ensure that the job can get done. A careful selection of public service leadership, that has actual proficiency with the programmatic content of these changes, would complement the other sources of broader community leadership, rather than relying as we do today on policy without an operational plan that can over time, generate actual outcomes in people’s lives “one person at a time”.

 

It is useful to note that Ireland would not need to single-handedly pioneer these changes, as much of that work has already been undertaken over at the least the past quarter century in many countries. For instance, the US has in place well over 300 different individual funding streams targeted at specific sub-populations. Australia is well into the process of making nationally portable individualised funding available to 460,000 Australians with a disability. New Zealand has generated and expanded individual funding going back a decade, the UK pioneered individual budgets several decades ago and various Canadian provinces have established long-term individual funding arrangements. Scotland has recently made it a right for people to have individualised options if they so choose. Consequently, Ireland is not starting in an experiential vacuum, as it can readily draw upon the work of many other countries, as well as the many notable accomplishments by small numbers in Ireland in the last decade.

 

That process of borrowing from the experience of others has been occurring informally for some time now in Ireland, and accounts for much of the appetite for progress on creating individualised options in the country. However, what is now lacking is a governmental decision to operationalise its existing policy into a workable multi-year plan that can incrementally build the individual options that the Irish public increasingly favours. If individualised options were to increase by 3-4 % per annum, then it is quite realistic to expect that 30-40% of persons with disabilities could conceivably enjoy individualised lifestyle and support options within a decade. That would also mean that Ireland would no longer struggle with 30%-40% of out-of-date congregate and mini-institutional models. Together, these two trend lines would mean almost doubling the actual hands-on level of experience in successfully creating good lives in the community “one person at a time”, for Irish people who live with a disability. This approach assumes the freezing of any new funds to expand congregate and mini-institutional support arrangements so that individual options become the preferred operational choice going forward.

Most importantly, it means that the government of Ireland must come to decision at a political level so that the work to accomplish the policy can begin and gradually expand in coming years. There is no doubt that the will to do so exists within broad aspects of the community and the service sector.  Naturally, there is a wide range of complex problems to tackle and resolve in getting this process to move to benefit greater numbers. These challenges will become even more evident as experience is gained with greater numbers. However, addressing the predictable implementation problems will inevitably be incremental. Thus, the key at this point is to ensure that the operational process be launched and once that is done, the outcomes will gradually appear as the work gets done.

Author Bio

Michael KendrickMichael J. Kendrick of Kendrick Consulting International is a frequent visitor to Ireland. He works on emerging best practice in the sector in many countries. Michael has provided leadership, writings, consultation, evaluation and in-depth teachings on how to develop personalised opportunities for people with disabilities. He has contributed writings to Frontline on various other occasions. kendrickconsult@icloud.com

Paul Kilmartin points a thought-provoking finger at government policy in the face of one of the most concerning news stories of 2017 so far.

  • An 11 year old died in Tullamore.
  • All her short life she suffered a lot.
  • Her Mother was a doctor and gave her some injections to help with the pain. She died soon after.
  • Her Mother felt let down by Ireland’s services.
  • The Health Sector needs more money to provide better services.

On Saturday the 15th of September, 2012, an event took place in a large midlands town which would as it concluded, turn an eye on the role and pressures of the carer in assisting the severely disabled. Despite the legal and ethical ramifications, which as of now have found the primary carer innocent of all charges, the smaller points of detail galvanised the public’s opinion of the woman who was accused of the manslaughter of her 11-year-old daughter.

Emily Barut, 11, daughter to Bernadette Scully and Harun Barut, and living in Tullamore, had led the most difficult of times in her profoundly disabled young life. Suffering from severe epilepsy, microcephaly and cerebral palsy, she had epitomised what it would mean to suffer. Emily, as her mother testified to in court, would suffer badly from colic, crying incessantly. In the last few weeks of her life, she had undergone surgery to replace the tube through which medicine was being delivered into her stomach. According to her mother, she had been having more frequent and violent seizures in the days leading up to her death.

 

This had led to Bernadette Scully, a practising G.P., administering the drug, Chloral Hydrate, when her daughter became upset at 2am and 6am that day. She also said that Emily then had a massive fit after 11am and she administered some more. Emily died, as the State Pathologist, Dr. Marie Cassidy said, from a massive seizure which occurred six to eight hours before her death.

Throughout the trial of Dr. Bernadette Scully, a separate picture began to emerge, away from the accusations. It was one of hopelessness that Bernadette Scully felt in the face of the suffering of her only daughter. She told of how ‘people were not queuing up’ to help her disabled daughter. And in fact, this is a similar tale from the many families who care for children or adults with disabilities of any kind. Bernadette Scully felt let down by a complete lack of services.

 

Advocates for services for the disabled are constantly fighting for access to financial aid and greater inclusion in society for those who need it the most. The glare of the media’s spotlight shamefully moved away from the case of those with a disability in the weeks after the acquittal of Dr. Scully. Nothing to see here folks, move along.

We don’t have the resources, that is the Grimm style fairy-tale tale that is often heard while referring to supports for families of those with disabilities. It is deemed more important for the governments of our time to build a new Luas line or shorten a commute by spending seven million euros on a bypass around Athlone. Let’s think about that. Emily Barut and hundreds more like her deserve that we think about that.

Author Bio

Paul KilmartinPaul Kilmartin is a keen writer of fiction, with a background in nursing studies. Hailing from Tullamore in County Offaly but now living and working in Dublin. Paul works in various health and mental health sectors across the city for the Nursing agency Nurse on Call, and uses this broad overview of the services to address social issues in his writing.

Bernard O’Regan presents a consideration of an approach to leadership based on what matters to the person, and supporting frontline staff to focus on that.

  • The current system of leadership is too driven by bureaucracy
  • The leadership we need now must be driven with and from the frontline
  • Leaders have to understand what the purpose is
  • Leaders add value to the frontline and help develop solutions that will work in particular circumstances
  • Leaders look at the system, see what matters from the person’s perspective and help frontline staff to make it work.

Leadership and the ability to lead change has never been more important in the disability services sector in Ireland than at this time. The opportunity to make a real and significant contribution to the lives of people is great, but the challenges of a creeping bureaucracy and the rigidity of compliance have never posed such threats to that opportunity.

Increasingly, we experience “leadership” defined by a command and control approach, underlined by somewhat limited approaches to accountability and compliance, and often driven by templates, returns, inspection and action plans. This kind of leadership results in a very driven sector, with the propulsion coming from strategies and action plans, sometimes with very well-intentioned and appropriate goals, but also a risk of incoherence, and of exhausting a service delivery system. Ultimately, it delivers some good but also brings risks. Often the person who should be the focus is missing.

Leadership is essential, but this is not the leadership we need now. It’s too systems-oriented. It’s important that we understand who can provide leadership, and lead a change in thinking about leadership, and actually lead. The usual place to start is at the top, with the people in the usual management roles in the hierarchy of organisations.  We know people in those roles, many of whom are leaders, are leading change, and are making differences in people’s lives.

But it would be wrong of us to think that that is the primary reservoir of leadership. There is plenty of evidence to show that senior managers can be influenced and wooed by ideas. However, many of those ideas get packaged, the outcomes get specified and the “organisation” system of planning is applied, sometimes with the innovation and life of the original idea disappearing in the process-based approach.

I’m not suggesting that these structures are not important and don’t have roles to play – how could I, given my own role in an organisation? But there is another way of leading which is for all of us: just get on with it!  There are many independent-minded, willing, skilled and capable people who really want to do good work in their area or team. If we empower them, let them get on with it, don’t obstruct them or make it too difficult, then a caucus of competence will emerge. When this happens, and there is good data to support it, and where people are vocal in saying that they like what’s going on, it will build momentum and become increasingly difficult for organisation systems to obstruct it.

We need to do as much as we can to demonstrate what is possible and for this we need good leadership.  This is best considered in reflecting on what leadership can and does look like when practiced by people who are good at it.

Frank Gilbreth set out a structure for good performance that looked like this:

I will do a good job for you if:

  • I know what good looks like; I have a clear sense of purpose, shared by the people around me
  • The organisation is consistent in paying attention to that purpose
  • When my manager comes around, he/she is primarily interested in what we are doing to meet that purpose and to help me to do better
  • Everyone around me treats me and my work as important
  • I have data that demonstrates how we are delivering that purpose and my manager uses the same data to help me to deliver that purpose better
  • I have the tools, information and skills to do the work
  • I am able to make the decisions about all of the things I will come across everyday
  • I have access to support and expertise when I need it – and it turns up when I need it
  • My manager helps to work around or solve the pressures the organisation may create that undermine the purpose.

This is what the best leaders do. This is not a soft, woolly leadership; it’s real, dedicated to a purpose, truly person-centred and committed to supporting people to play their part as well as possible in meeting an agreed purpose.

Effective leaders work with teams to help them understand what they are there for, setting out in very clear and concise terms what anyone would expect to see if the purpose is met. This is not about the usual mission statements; it’s about statements developed through discussion and testing so that there is ownership by all and a commitment to it. The leader’s role is to help develop this, including people, but ensuring that this is done at the frontline of services, including the people served and frontline staff. The good leader observes what is happening, sees the consequences and effects of what is done. He or she is asking questions, about how what is being done meets the stated purpose.

Data can be used to learn and to create feedback for everyone involved. We are all swamped with gathering information, completing returns and templates. But gathering the right data, good data, and then reflecting on it by asking “What does the data tell us?” is critical, not just data for data’s sake. The right data, made available to everyone so that they too can see it, can be an extraordinary tool in reinforcing what good looks like. When people see the evidence of their work in good data, it demonstrates their capability to do the right things, that they can be in control of what they do and that they are more than automatons in a bureaucratic system.

The two main principles for leaders to reflect on and adopt are:

  • The leader’s job is to add value to the frontline.

As leaders spend time with people supported and the frontline staff, seeing what is working, they must seek to find out what gets in the way of purposeful work. In doing this, the team builds confidence in the leader and their ability to make things happen. This in turn will build their confidence in pulling what they need from their leader, whether it be information, training, support or access to others within and across the organisation and beyond.

 

  • Doing great work does not mean implementing pre-determined solutions, however plausible they may seem, even if other organisations have successfully implemented them.

You have to focus on your own organisation, where you work and understand it. Each organisation, and team/service/support arrangement within it, is unique and what happens elsewhere is not the same as what happens where you work. The people are unique. The relationships are unique. What happens elsewhere is not the same, but it can be used to better understand what happens in your team or organisation. By being true to your purpose and principles, and by applying them, you will discover what works and gain confidence in the logic that solutions will emerge from the work.

This, however, is not the end of it. The reality is that we work in an increasingly bureaucratic system, a system that obstructs this type of leadership, because it doesn’t really understand it. The reality is that the leadership job has not even begun. The work that people are doing is the direct opposite of the way the system has been working historically. Everything in that system will undermine and block what they are trying to do. The leader’s role is crucial and tackles these problems. Some things may be simple but in many cases the leader will need to find a way to work around the existing system. At the same time you can try to engage in other departments with data and stories from the new work in order to encourage them to be helpful. The real work, however, is to make the changes systematic and permanent so that the organisation actively supports the new design. That will take time and skill.

A common problem is that the current system is often based on hierarchies of grades and qualifications. You quickly learn that this is not only irrelevant but unhelpful. What happens is that the frontline is happy to ignore this for a while, but when you have to redeploy people, employ new people or change structures and acknowledge different skills, the HR system rapidly becomes a blockage. A strong leader acknowledges this problem and then seeks to change it.

As the team start doing the right things, any problems will emerge and leaders then have the confidence that they are tackling the right problems and can see the needed outcome. For example, a common problem in children services is the transition where they move through age to find barriers. There is the service that “meets their need” until they reach a particular age, and then they are handed over not simply to another service but sometimes to another organisation.

One example of the effects of this is of Mary who was due to leave school. She had strong autistic spectrum conditions. A new location and service was found for her which on the face of it would meet her needs and the system congratulated itself on what had been achieved with new funding. What mattered for Mary, though, was continuity and trusting relationships. The transition by necessity means that everything had to change. But Mary had not changed.

The result was predictable and self-fulfilling. Mary’s behaviour became very “challenging”, with the result that her service failed her. The cost grew both financially and in terms of the strain on Mary and her family. What was needed was for the support worker with whom Mary had a strong relationship to follow her through the transition but budgets and organisation/system structures would not allow this. A good leader could have resolved this problem – before it became a problem.

The real obstacles to changing thinking are rarely technical problems, but problems of will and courage – the place where leadership lives. The power of solving this problem is to demonstrate that other problems can be tackled if there is the will to do it. The problems may not be easy or simple but the will to tackle them is the vital component.

It is not enough to make the changes in tackling the problems. The leader must always go back to the frontline and ensure that their efforts have paid off, and that the system is indeed working better as a consequence. This not only builds the leader’s confidence but also that of the frontline. Historically, frontline teams hate it when leaders and managers turn up. It usually indicates that something has gone wrong. The test of a good leader is that frontline teams always want them to turn up because they know that the leader is only interested in making things work better for them.

Tackling the wider system across organisations is even more challenging, but also indicative of the cost and time and effort that will be needed in order to make life better for people and to see the true economic return from this thinking.

An example of this can be shown through the case of John, who also has a diagnosis of ASD. He was described as a pleasant young man who sometimes presented with significant behaviours of concern. When he was 16, he was attacked by someone living with him. He defended himself and severely injured his attacker. Had he not been autistic he might have ended up in prison. As it was he spent the next 20 years in a high support service in an institutional setting. Those close to him were working to get him out. It was important that he moved without a “reputation” or service system that would continue to plague him as he lived his life in the community, like any other citizen. It took a huge amount of time and effort, but John is now living independently with the support of a good friend. Had this not happened, the best the system would have done would have been to simply move him from the high support service into some alternative special service. No-one would have challenged what they thought they knew about him. That might have assuaged some consciences, but would have been very expensive and would have done John little good. As it is, he costs little to the State and he is thriving.

In a way we don’t need to think too much about whom leaders need to be. Clearly the further up the hierarchy you get, the more influence you have within your organisation/situation to make changes, but we need to pay attention to the experience that it is often the people close to the frontline who get it first. You can lead from a position of “first among equals” – it’s not what’s on the organisation chart that makes the difference; it’s what’s in your head. Anyone can be a good leader. The key is to look at the system from the person’s perspective, see what matters and help the frontline to make it work.

Author Bio

Bernard O'ReganBernard O’Regan is Executive Director of Western Care Association. A teacher by training, he worked in residential and day service before commencing a management career that brought him to his current position.  Western Care Association has been focusing on individualising its services in recent years, one person at a time, to support people to have good, self-directed lives, supported by leaders who understand the necessity of knowing what’s really important.

John Giles examines Complaints - what they are and how to deal with them…

  • There are a lot of complaints these days about services but don’t forget that we used to have no services at all.
  • Trust between the public and the services has gone down.
  • Complaints provide valuable feedback for services.
  • A new way is needed so families and services can participate together.

The Background

At a social occasion some time ago a very upper-class lady, obviously of the better sort, rounded on my wife and exclaimed “are you a complainer?”. That incident has become part of family lore, but it’s a good question if you have a dependant or you yourself are at the receiving end of care services.

This article looks at the business of complaining inside and about a care service, and is a commentary on how the voluntary care organisations fit into current society, and the complaint culture that seems to be all around us.

Before looking at complaints themselves, let’s remember that those of us who have been involved in building up a care service for many hundreds of families are looking at a success story! Forget for a moment the current shortfalls, the frustrations because of the shortage of resources, the scandals, the anger of many families and the rest of the negatives. Think of the positives, and the good changes that have occurred in the delivery of services to intellectually impaired persons and their families over the last forty years!

Some years ago, most voluntary services were created against a social background in Ireland, where:

  • There existed no provision for boys and girls that were intellectually disadvantaged, (to use the, now, thankfully, outmoded term, “mentally handicapped”);
  • Many, desperate families led local movements, that resulted in the establishment of volunteer-led services – these grew from a few helpers in a borrowed room, depending on endless coffee mornings raising a few punts (it was punts in those days!), to complex organisations spending millions of taxpayers’ money;
  • Parents were facing the burden of children who had grown into young adults with major difficulties. They were desperate for almost anything, and often they were living in difficult circumstances as well;
  • Parents sought assistance and relief, from whatever source, not quite as supplicants. But a due deference to authority was the norm.

 

What has changed?

This social environment steadily changed, as one would expect over thirty or so years. That deference to those who have power is gone as a feature in Irish society, and now:

  • Families are recognising that what were once voluntary “charity” funded services are, in fact, taxation funded professional services provided by suppliers under contract to the State, and since families are paying, then they have a right to expect to see their children’s needs met fully;
  • Families are aware of the scandals in organisations that purport to be focused on care, but where it appears that in some cases staff are featherbedded and media exposure has shown appalling care practice, and in some cases alleged fraud;
  • Where once there was a close community spirit between the local care workers (residential and day) and local people, there has been a separation.

The former synergy has been eroded by overarching central management which has driven highly-trained, professional staff to be acutely aware of regulations/inspections and the threat to them if they fail to comply.

Even the language demonstrates this separation, for instance:

  • the “house parent” has become “the CRM, the Client Service Manager”,
  • the individual client is now the subject of “a business plan”;
  • Family views may sometimes be unreasonable, but parents will have spent their entire lives from the birth of their children, struggling to adapt to their changed family circumstances, very often fighting officialdom, and now in the current climate finding themselves distrustful of the care sector and its management. It need not be a surprising that many are angry.

At the risk of giving offence, it may be said that parents are sometimes binary in their complaints. The “binary approach” decrees that every organisation or person is either an angel or a demon! Typically, and quite rightly, parents focus on two areas, firstly on particular events relating to the treatment of their family member, and secondly, the treatment meted out to them by the service provider when they have, possibly, forcibly, expressed their complaint.

Even the prevailing personalities of individual staff members becomes a powerful component in the handling of complaints. At this point the “tone” of management becomes critical, along with the culture within the organisation. Unfortunately, each member of the management string is saddled with the risk of blame, liability, reputational issues, and serious accountability; this, consciously or otherwise, creates an organisational culture, which in turn drives the tone of how the service provider responds to a complainant.

All complaints occur within a community context, and part of the context is the reputation that a service has with a care service organisation, and what contributes to the reputation of a service is not easy measured. The public often look at what the media are saying and what they hear from local sources about internal disputes and problems, and arrive at skewed conclusions. Unfortunately, the service user is dealing with providers that usually have a local monopoly and the user has no redress except to complain.

 

The Reality

Often management simply do not have the resources to meet quite reasonable requests, or have some other reason not to. In these situations, simply placating the complainant may be seen to provide an easy way out at the time, although it is somewhat dishonest!  Obviously, integrity in handling complaints is critical, even if that means a clear NO. A common observation by complainants is “nothing was done” – nothing happened, and here good communication is found wanting.

Families complain about the lack of transparency in big organisations, although when queried on this issue, management will often insist that transparency is what they would wish to have. But, how much to tell, how much to disclose, and in the present climate, how much may be disclosed continuously bedevils a social service organisation. On the other hand, privacy law can be used as a handy defence mechanism. The customer in the shop wants to know what is in the packet, equally the consumer of care packages wants to know what is going on!

Complaints should be seen as valuable to a service provider. On the one hand, they provide some valuable feedback from the consumer on service standards and relationships; on the other, they represent an opportunity to test and sometimes correct the system’s quality controls and internal staff relationships; they can also expose the culture (of blame or supportive) within the service provider – prompting the analogy that without crashes, flying would not be as safe as it is.

In human services, dealing with people – both those receiving the services and those delivering them, all complaints are sensitive, sometimes toxic, and very often this becomes a battlefield. The worst possible way for services to deal with complaints is in a combative manner, although sometimes the exchanges that surround complaints can easily become threatening.

 

So what can be done?

Perhaps organisations should focus their attention on, and devise a new way to manage, the interface between user/family and the front line of service provision, between the customer and the provider.

Unless this “interface” is given attention, then complaints and misunderstanding will multiply (think Irish Water). The user is a “customer”, a vulnerable, anxious customer, who has suffered in ways that people who have not been there find it difficult to understand. They look to the supplier, not only for their rights, but for an empathetic and respectful response, certainly not any combative form of response.

A clear, structured policy by management to make users and their families “participants”, not simply “receivers”, would be good.

It is of interest to understand why it is that attempts to involve families in the governance process often seem to have failed. Why does the appointment of people who are seen to be representative of the user generally lead to dissension at the Boardroom table? Or, why does the creation of “focus” groups and other similar devices fail? The reasons are complex: they may turn on the professional vs the amateur viewpoint, and much else besides. However, two gaps in understanding by non-executive directors stand out – how to be effective, and how and when to use their powers. There is, furthermore, the problem of the balance of governance powers between non-executive boards (very much part- time), and professional executives, who generally want to be left to run the show as they deem proper! – and who can blame them for that?

An Idea

Most organisations who provide care services are set up as “guarantee companies”. This is a corporate model that lays down certain ways in which the entity must be managed.

There are three key components in the governance structure of a typical Guarantee Company:

  • the members,
  • the board of directors, and
  • the executive.

In general, the current position is that the Members and the Directors are self-appointed. There are exceptions, but structures to ensure a positive and clear input by the service users and their families are not common.

Hitherto, the “Members” component of the governance structure has been largely ignored. In fact, some care organisations have dismissed their members, and others are considering doing just that. But, maybe a carefully worked-out system of seeking and appointing members could create a “third force” in governance that might achieve a balance, ensuring the Company’s accountability upward to the statuary authorities, and downward to its customers. It might also provide a body embedded in the community that would have obvious benefits if the Members themselves understood their purpose and powers.

Done in a thought-out, deliberate and structured way, this is a change that would embrace the users and their family into the governance structure of the Company.

 

To take this a little further…

Perhaps members could become shareholders, able to purchase a nominal set of shares at a set price (say ten €1 shares?). The shares would be non-transferable, and would be bought back by the Company in certain circumstances. Of course, there would be no dividend distribution. Technically, ownership of a share would give the service user/family a clear stake in the service provider’s governance. It would make them a participant, if not in the direct management of the organisation then at least with a powerful influence. Moreover, the Directors and the Management would recognise a body to which om they would clearly be accountable.

This is high-risk stuff, difficult to design and operate, probably distasteful to executive management, nevertheless worth consideration. Again, the object should be to achieve participation.

Maybe service providers should turn their attention away from their accountability upwards to the HSE and other authorities and consider in depth their accountability downwards to the customer?

To sum up

Clearly, at the interface between the consumer of services and the deliverer, there are problems in the relationships between “them and us”. The service provider defence, if challenged, says that only a small voracious minority of consumers are generating bad feelings and the majority are happy with all aspects of service delivery. If this “statistical” defence is offered, it’s a poor argument and unsafe. Whatever the ratio between the “good view” and “bad view”, the provider must take clear steps to maintain its reputation in the community, not just for its own benefit, but so that users and their families have comfort in the quality of the service provided to their children.

Society is moving in a way that service providers should move, i.e. to embrace the consumer as a participant and to find ways actively to empower families in the organisation’s governance.

Public services in modern times must have a consumer orientation and for their part families should put aside the old deference and become knowledgeable and understanding participants in the governance of services.

Participate not Placate!

Some attempts have been made to do this, but seem to have failed – why? The failed processes need to be carefully examined by executive management and the non-executive board and a new model designed. The community must be brought into the governance process in a positive way.

Does this mean change for executive management, the non-executive board and governance?

Yes, it most certainly does.

Author Bio

John GilesJohn Giles is a Trustee and Secretary, and formerly Managing Director, of Sunbeam House Services.