Sunday, August 20, 2017
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Mei Lin Yap’s latest article details her new Disability Inclusion & Advocacy Society in Trinity College, Dublin.

  • Mei Lin Yap has  teamed up with Margaret Turley to start a Society in Trinity College Dublin.
  • It is called Trinity Society for Disability Inclusion & Advocacy.
  • Its aims are to promote inclusion in the Trinity community and educate people about the rights of people with intellectual disability.
  • Meetings will be monthly.
  • It will provide education in self-advocacy to empower the members.
  • The society will launch during Fresher’s Week in September 2017.

My name is Mei Lin Yap and I am a young woman with an intellectual disability. I have teamed up with a fellow Trinity graduate, Margaret Turley, to start a Society in Trinity College Dublin.

I met Margaret on a lecturing project in Trinity College in which we were both involved. Myself and Margaret were looking for opportunities to be involved with other groups and we learned about the Inclusive Research Network (IRN) through Dr Edurne Garcia Iriarte, who is one of the lecturers in the School of Social Work and Social Policy in Trinity College Dublin and has supported the IRN since 2009. Margaret and I attended the IRN meetings in Limerick, and as a result of these meetings we became interested in starting a society. With support from Dr Garcia Iriarte, we have managed to get others on board and we are in the process of starting a society in TCD. We hope the Society will help to create an inclusive environment in TCD by involving disabled and non-disabled students, staff and alumni.   We intend to collaborate with all departments of Trinity College and invite their input.

We are calling ourselves Trinity Society for Disability Inclusion & Advocacy. This will be a unique society. Our aims are to promote inclusion in the TCD community; to educate people about the rights of people with intellectual disability and the contribution that we can make to society; and to make changes to the services that we use in every day life. Our aim is to advocate and lobby, to help educate and raise awareness in order to improve the lives of those with disabilities. We hope that raised awareness and understanding of disability will in turn influence better provision of supports in relation to health, education, and employment. Our big dream is to start off by breaking down barriers that currently exist in society.

We are now looking into different funding opportunities. The Society will be led by CCL alumni Mei Lin Yap and Margaret Turley. We will be facilitating monthly meetings to address inclusion and cover topics of importance to people with disabilities. People with disabilities will have the opportunity to share their experiences and learn from other participants. It is also intended to provide education around self-advocacy to empower our members.

The committee consists of Chairperson; PR & Marketing Officer; Events Liaison Officer; Secretary; Treasurer. All of these posts are held by people with intellectual disability. Each officer of the committee will have a non-disabled support counterpart. We are working towards launching our Society during Fresher’s Week in September 2017.

Author Bio

Mei Lin YapMei Lin Yap is a regular contributor to Frontline Magazine Ireland and our social media pages, with a keen interest in the rights of people with disabilities, particularly with regard to access to education and employment.

Disability rights activist Joanne O'Riordan led a massive demonstration on the Rights of People with Disabilities to Dail Eireann, Dublin on March 30th 2017…

Joann O'Riordan
  • Joanne O’Riordan led a protest in Dublin on March 30th 2017.

 

Disability rights activist Joanne O’Riordan, with representatives of more than 100 disability organisations nationwide, led a public demonstration in Dublin on Thursday, March 30th 2017, seeking to highlight the 10-year anniversary of Ireland’s failure to ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

​The UNCRPD is the human rights convention concerning persons with disabilities. It is a list of rights guaranteed to persons with disabilities to improve their access to society, education and employment. Ireland remains the only country in the EU that has failed to ratify the UNCRPD after the Netherlands and Finland ratified it last year.

The demonstration took place outside Dáil Éireann, Kildare Street, Dublin 2 at 11.00am on the day, with the support of Inclusion Ireland, and was attended by many members of Dáil and Seanad Éireann, including Róisín Shortall TD and Senator John Dolan, both of whom actively campaign for the rights of people with disabilities.

protest2Twitter was alive with activity on the day – you can see @nolimbsnolimits, #makeequalitythepolicy and #RatifyCRPD for detail of this highly successful event.

TheJournal.ie’s detailed report, with pictures and video, can be found here: http://www.thejournal.ie/un-convention-disabilities-joanne-oriordan-3315265-Mar2017/

Further information can be found at Joanne’s own Disability Rights Protest webpage, where you will also find more detail explaining the UNCRPD.

You will find detail on the protest itself here, on the Easy-to-Read poster.

protest3Inclusion Ireland released a press statement, condemning the 10-year delay in ratification and calling on Government to resolve it immediately. Inclusion Ireland Press Release

Contact Details

More information can be found on Joanne O’Riordan’s Facebook page https://www.facebook.com/Joanne-O-Riordan-page-No-Limbs-No-Limits-338388866219802/?fref=ts or via her Twitter feed @nolimbsnolimits.

Author Bio

Joanne O’ Riordan is a Disability Rights Activist and winner of the Outstanding Young Person of the World award 2015. She is a regular contributor to TV, Radio and various other media outlets in support of her campaigns for the rights of people with disabilities.

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

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.

As Mary-Ann O’Donovan tells us, the role of policy and personal choice in moving to a new residence.

  • People with intellectual disability are moving to new homes/places to live.
  • Some people are moving to new homes in the community
  • Most people move to a similar type of home
  • People are not always asked if they want to move
  • People do not always get to choose who they will live with.

National housing policy for people with disabilities promotes the move from large residential settings to community-based living (with four people the recommended maximum number sharing the same residence). This is in line with international practice and the UN Convention on the Rights of Persons with a Disability, which states that an individual has the right to live independently as well as having the right to choose where and with whom to live. This is a welcome advancement of the self-determination, rights and autonomy of people with intellectual disability.

Who moved to a new residence?

Tracking where people with ID lived between wave 1 IDS-TILDA data collection (2010) and wave 2 data collection (2013), identified 120 movers. Of these 120 movers, just under 30 % moved to a less restrictive setting (e.g. a community home or independent living). The majority of moves made were lateral moves, which involved an individual moving to a setting similar to the one they were resident in previously. Also types of move were not all in line with the policy of de-institutionalisation. Some older people with ID were found to move to more restrictive settings (e.g. from community to institutional settings).

The breakdown of these movers by gender, age and level of ID are shown in Table 1.

 

Table 1: gender, age and level of ID 

 

Lateral Community Restrictive
Female 63.9% 37.5% 50.0%
Age (mean years) 59. 9 58.0 57.1
Mild ID 16.2% 9.7% 18.8%
Moderate ID 57.4% 45.2% 68.8%
Severe/profound ID 26.5% 45.2% 12.5%

 

Choice and involvement in decision to move?

Personal choice accounted for 10% of the moves made. The most prevalent reason for moving for the lateral movers was to accommodate the service (34.8%); whereas for more restrictive movers,  it was due to a change in health status (53.3%) and as result of service policy for more community-based moves (61.3%).

 

Though personal choice was not a dominant reason for moving for most of the participants, national policy and human rights conventions attest to the importance of choice of where and with whom to live, and that the individual with ID is involved in the decision-making process around moving to a new residence. The IDS-TILDA data illustrates that the rate of involvement of the individual in the decision to move was relatively low, with 7 out of 10 people not involved in this decision; and 4 out of 10 people reporting that they did not want to move. However, there was high reported happiness post-move. The decision to move involved multiple stakeholders for the majority of movers.

 

Clash of policy and choice?

From the data to date it would seem that moves that are taking place are not consistent with current policy directives, and that personal choice does not appear to be considered in most cases. This is a complex issue and needs broader debate. Though de-institutionalisation is a positive policy initiative, for people with ID who have only ever known this type of setting and have strong connections to the place and people within that place built over many years, the prospect of moving somewhere new could be quite daunting. This is a challenging situation for policy makers, service delivery, people with ID and their families. Further dialogue is needed to disentangle the policy recommendations, which are widely welcomed, and the individual’s preference for change (or not) in later years of life. How transition is planned and managed and the extent of involvement of the individual with ID and their chosen support, be it family, friends, advocates, is likely to impact greatly on successful implementation of the policy and enhanced quality of life and well-being outcomes for the individual with ID.

It is important to acknowledge the importance and enormity of such transitions, to track how they are happening, and their implications for the health, participation and well-being of the older ID population.  The Intellectual Disability Supplement to TILDA is currently tracking this movement by people with ID and will track longitudinally the impact on health and well-being. Although the movement of people with ID to community-based living is positive, it has the potential to impact negatively on people with ID if the individual is excluded from the decision-making and planning process, if the move is undertaken hastily and without due time and consideration, and if the required and appropriate supports are not in place to maintain the individual with ID in the new residence in the community.

More research is needed on both the processes and consequences of moves for people with ID as they age as well as greater insight into the extent of involvement in these processes. In addition, policy does not seem to acknowledge the diversity of moves that are happening in practice; there needs to be greater linkage between housing and health policies, to ensure the appropriate health and social care supports are in place so that the person with ID can age in the place of their choosing.

Author Bio

Mary-Ann O’DonovanMary-Ann O’Donovan is currently project manager of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and based in Trinity College Dublin. Mary-Ann completed her PhD in Health Services Research in the Royal College of Surgeons Ireland in 2015, focusing on the health and housing needs of older people with an intellectual disability. Prior to this she was employed as research officer in the Disability Databases Unit of the Health Research Board. In this role she was responsible for the management of the National Physical and Sensory Disability Database (NPSDD). Mary-Ann has also worked as research officer in the National Disability Authority and the Rehab Group.

In this opinion piece, David Quinn, Managing Director of Pascal Software, Board member of Inclusion Ireland and member of the Social Democrat party, has taken a close look at the current Irish taxation system. Here he offers a view of a different way of doing it, to be more equitable and eliminate the poverty trap for low-income earners, which could benefit people at all levels of society, including people with disabilities...

  • Universal income would give every adult a basic income every month.
  • This idea has been looked at and talked about for many decades.
  • It might be a way to free up people to take on other roles in society such as being a carer.
  • It might benefit the lesser well-off parts of society.
  • David Quinn’s figures make interesting reading.

Back in the 1930’s, The New Deal was an imaginative but wholly necessary series of programmes enacted in America between 1933 and 1938. They were inspired and enacted by Franklin D. Roosevelt as the means of ending The Great Depression. It involved all the R’s – Roosevelt, Relief, Recovery, Reform and preventing a Repeat of another depression. Not only did it work but its legacy is still in place today, with the FDIC (Federal Deposit Insurance Commission) and the SEC (Securities & Exchange Commission) amongst several institutions set up at that time. Some learned people suggest that the suspension of The New Deal’s bank regulatory legislation (Glass-Steagall Act) in the 1990’s marked the beginning of our 2008 financial melt-down.

So why do we in Ireland need another New Deal? Are we not recovering and well out of our recession? “Keep the recovery going” – whatever recovery was going on, it wasn’t and isn’t lifting all boats. Many people were and still are drowning in a perfect storm of reduced income, higher cost of living and penal rental costs and for those lucky enough to earn a decent income, are unable to buy their own home. My moral compass puts homelessness as our No.1 priority demanding immediate State provision, but on a wider basis, we also have to address this basic income issue for everyone as well.

What can we do? Increase Social Welfare rates? Increase wages? Take more lower-paid out of the tax net? All well-intentioned measures, but they don’t address the kernel of insufficient basic income for all. We’ve seen the fear and anger and anti-establishment sentiment that were and are a major part of the Brexit and Trump seismic events. And there’s more coming down the tracks, with Marine Le Pen looking to join this motley crew in a journey to God-knows-where. Do we have to put all our hope and faith for the future in the hands of Angela? Geez, how times have changed.

Our Social Welfare system is creaking and arguably, no longer able to provide the comprehensive support structure that our complex society now needs. We have different schemes for different special circumstances – all well-intentioned and absolutely necessary. Disability benefit, job-seekers benefit and allowance, sick-pay, maternity and now paternity benefit are amongst those benefits intended to support those who cannot work. Now, new child-care measures are being introduced. Applications are submitted, considered, approved, reviewed and hopefully they are paid to people who need to put food on the table today – and not in the perhaps 6 weeks or more that these applications might take to process fully. Those interest groups who organise, lobby and get their act together to mobilise their voting power are the ones who go to the top of a long queue for scarce State resources. Those who are tired, not as organised in mobilising their voting strength and too disparate get diddly-squat. There are lots of special-interest groups in the latter, and that includes the disability community.

Parallel to this we have the world-wide change in working patterns. We have no such thing as a ‘job for life’ any more. Science-fiction type stories about robots, automatically-driven cars and artificial intelligence suggest that we’re leaving Kansas with Dorothy, with huge implications for work/leisure life balances.

That said, in comparison with other countries, Ireland has reasonable levels of support paid to children (Child Benefit) of €140 per month and to older people (Contributory and Non-Contributory Pensions of more than €230 per week). But there are all those rules and regulations – some of these benefits are taxable although unlikely to result in actual tax deductions, exemptions for non-pension income up to a certain amount, means-testing, blah, blah, blah. The Irish Social Welfare system is complex, however – what the State gives with one hand can be taken back later as a “claw-back” if circumstances change. All benefits are subject to reviews, audits, appeals and local political intervention. The DSP seems to protect the State’s financial resources like they were minding their own Communion money. Pity the banks’ auditors and Department of Finance regulators weren’t as careful with our assets.

Those earning a regular income have the joys of income tax, social insurance and social charges deducted from their gross income. Revenue uses a variety of acronyms to make these more familiar – PAYE, PRSI, USC, P2C and now LPT, PRD and whatever you’re having yourself. We have different rates and bands and – oh yeah – tax credits as well. Nearly forgot about those – very important in the overall calculation of your tax deductions. Credits sound good, we all benefit from those right? Eh, no, afraid not. If you earn less than €16,500 per annum, you don’t earn enough to make full use of these valuable credits where there is a use ‘em or lose em’ rule. So those earning the lowest incomes get the least benefit from these credits.

Some groups get more credits than others. Some personal expenses are allowable for tax purposes. Not everyone knows what I’m talking about here, which is another reason why many people are not availing of their full entitlement and are currently paying too much tax. And that’s without trying to explain how pension contributions are used as an effective tax avoidance measure. You can check out www.revenue.ie for all of this information.

So why don’t lower-paid workers, whether employed or self-employed, get a refund of their unused tax credits? Nope – that good idea has been rejected by our political leaders, a dreadful, mean-spirited decision. Instead, we have a tax system that has innumerable gaps, loopholes and special provisions that keep the tax consultants in business giving their expertise to those higher up the food chain so as to minimise the higher-earners’ statutory deductions. Nothing illegal of course – tax avoidance is the smart play when we have to look after our own situation, isn’t it? And woe betide you if you accidentally mention tax evasion. You’ll have the libel lawyers write to you quicker than you can spell “o-o-p-s”.

Let me introduce you to an old idea. Basic Income goes back a long way. From Thomas More’s Utopia and the humanist Johannes Ludovicus Vives in the 16th century, to Thomas Paine (one of America’s founding fathers) in the 18th century, the idea was promoted further by French political philosopher Montesquieu when he wrote: “The State owes all its citizens a secure subsistence, food, suitable clothes and a way of life that does not damage their health”. [See History of Basic Income on www.basicincome.org]. It was called Social Dividend when promoted in Britain in the 1920’s where a basic income payment was to represent the return to each citizen on the capital owned by society. And in the 1960’s, J.K. Galbraith supported James Tobin’s proposal for a ‘demogrant’ – a universal, unconditional payment made to all citizens. Martin Luther King’s economic dream was for the government to provide every American with a guaranteed, middle-class income (1).

So no, I’m not proposing a wild wacky new idea. In fact, back in 2000, our government promised to look into the idea for Ireland in An Action Plan for the Millennium, and they published a Green Paper in 2002. It is still available on the Taoiseach’s website (2). Since then, there have been several research papers written, in alphabetical order, by John Baker, Micheál Collins, Seán Healy, Eamon Murphy, Bridget Reynolds, Michael Taft and Seán Ward. As well as Social Justice Ireland advocating for this, there is another group of individuals, Basic Income Ireland, and there is a wealth of background reading on their website, www.basicincomeireland.com.

Earlier this month, Social Justice Ireland hosted a day-long conference: “Basic Income – Radical Utopia or Practical Solution?”(3). In my view, it is both a radical and practical new solution. In John Lennon’s words, let’s imagine . . .

For the purposes of this example, we are using €10,000 as the level of Basic Income that is paid to all adults, with a little extra to our older folk. This is a rounding-up of the current €188 per week job-seekers benefit. A Universal Pension can replace the contributory and non-contributory pensions. The only conditions for receipt is that you are alive and not in prison. You have the choice of taking up paid employment without any risk to losing this Basic Income payment. Mind you, you’ll be taxed – but isn’t that only right, as long as it is fair and reasonable with a progressive tax system in place where those on lower levels of income pay less than those on higher levels? We should want all citizens to be engaged with the cost of the State’s service provision, and the removal of lower-paid earners from the tax net does not achieve that. Indeed, those citizens who don’t pay income tax or USC are implicitly excluded by some commentators who repeatedly refer to “taxpayers” when they should refer to “citizens”. This reinforces the sense of exclusion or semi-detachment of a large group of citizens from such commentary. In truth, all citizens are VAT tax-payers.

Some have suggested that the payment of an unconditional Basic Income would act as a disincentive to work. Yes, there are bound to be a few, but how many people would choose to live on €10,000 alone? There are bound to be changes to work patterns, but with work patterns changing so much, it can only be positive to give citizens more security and freedom to live their lives of choice. The real stumbling block that has prevented this idea from gaining a wider audience and consideration is the cost. How can it be funded out of general taxation? The 2002 Green Paper suggested that a flat tax rate of 48% would be required to fund a Basic Income of €95 per week (just under €5,000 per annum). At that time the top marginal rate of tax/PRSI was 52.5%. Whilst this Green Paper contains discussion of the uncertainty and behavioural consequences, much of the monetary analysis is considerably out-of-date. Other studies have quoted various rates of up to 65%. I know I’m taking a bit of a risk of being ridiculed, but I’ve done calculations that show that by using an imaginative range of tax rates and bands, the State can fund this project whilst holding the top, marginal tax rate to 57%, up from the current 52%. This range of rates addresses many of the negative consequences listed in the Green Paper.

To do this in a revenue-neutral manner, this proposal uses a set of 4 tax and USC rates that result in a perfectly structured progressive tax system, where the effective tax rate starts off from a negative rate, up to zero and then evenly upwards to a rate of 50% for those on a gross income of €200,000.

Subject to further development of this model, and also subject to corrections due to certain assumptions and presumptions included here, this proposal’s figures show the following:

table of figuresCurrent 2016 figures are based on:

Tax Credit of €3,300, Standard Rate Cut-Off point of €33,800, Class A PRSI and Standard USC rates.

Next New Deal calculations are based on:

  • Basic Income of €10,000 paid tax free to everyone
  • No tax credit, 4 rates of Income starting at 10%, then 25%, 40% and top rate of 42%
  • Employee PRSI contribution added to new and higher USC rates of 5%, 10% and 15% with smaller bands
  • Initial USC rate of 40% on the first €10,000. This reflects USC becoming a Universal Social Contribution, helping to fund the universal Basic Income of the same amount
  • Employer PRSI to continue and increase to 15%, in line with other EU States, payable by employers and self-employed.

Note that Revenue’s PAYE tax and USC computer systems, together with most if not all current payroll software providers can cater for up to 5 rates of tax and 5 rates of USC.

So, what is this table is telling us?

  • If you earn €5,000 gross, your total nett income will be €12,500, inclusive of the Basic Income of €10,000, an increase of €7,500.
  • If you earn €50,000 gross, your total nett income is pretty much the same, just €40 lower.
  • If you earn €100,000 gross, your total nett income is just over €3,000 less than the current nett of €60,491.

But more importantly, look at the effective rate of deductions. This table shows that the new nett income starts at €10,000, with “negative” effective tax rates on earnings of up to €24,000. This means that an employee earning up to €24,000 receives more in Basic Income than they pay in tax and USC.

From that point onwards, an employee’s new nett pay continues to be more than the current system until they earn €50,000. After that, the employee is paying more tax/USC than now, with a more progressive tax system showing a gradual increase to an effective tax rate of 50% for employees who enjoy an income of €200,000.

So where’s the catch? Well, apart from the higher-earners’ small increase in their effective tax rates and employers paying a higher PRSI contribution, you tell me.

Who could complain about a new structure of Social Welfare and Tax/USC that provides the following benefits:

  1. Simple, equal provision of State resources to all its citizens
  2. Removes any possible stigma or loss of dignity of having to apply for Social Welfare benefits
  3. Provides a basic income that is sufficient to live frugally if not comfortably, plugging many poverty traps
  4. Allows citizens to exercise choice to pursue entrepreneurial or artistic enterprises in the knowledge that they will continue to have this basic income to tie them over
  5. Allows citizens to choose to take time from paid employment to spend unpaid time providing care to others, including children and older members of their family or other voluntary works
  6. Allows citizens the option to pursue further education or training with the comfort of maintaining a basic income for the duration of the course
  7. Allows citizens who are already in receipt of job-seekers benefit to pursue any possible employment, care or educational option knowing that their Basic Income is not at risk.

I’m sure there are many more benefits – can you think of a set of circumstances where someone you know can’t pursue their preferred course of action because of the imperative of either staying in their current lower-paid job or keeping their benefit entitlement?

On a wider basis, I’m told that there is research to show that raising the income of the lower waged has a really positive consequence on general health and well-being. Mental health is an obvious one here, with the reduction in poverty and stress. Not all poverty traps would be plugged with this New Deal, but it would certainly have a huge influence in guaranteeing an improvement for the most marginalised in our society, including the homeless.

Staying with the macro, the economy would enjoy a significant benefit from the additional spending power of those lower-waged citizens. Economists can help us here, but with an estimated €6bn increase in total nett pay of those earning up to €50,000, there should be a sizeable volume of additional spending, with extra VAT coming into the State’s coffers, extra employment, etc.

And don’t forget the possible elimination of or reduction in a raft of existing special purpose State benefits, such as illness benefit, student grants, enterprise support grants, amongst others. Lots of other benefits will of course be unaffected, such as the household benefits package, free travel, DCA, one-parent family payments, etc.

Figures available from Revenue have been used in this model to show that the State can afford to make this happen. Calculations have been made to compute the change in State revenues arising from this proposal. Rates and bands could be tweaked further to ensure that this remains revenue-neutral. These calculations would need to be reviewed and validated by eminent experts in this field. Those experts might also be able to put figures on the other financial consequences of this major far-reaching seismic change in public policy. But the structure of a Basic Income plus an imaginative use of tax and USC rates and bands can work.

Are we up for it? Have we, as a country, not shown a willingness and eagerness to embrace major changes in our lives – in my lifetime, we’ve had the EEC/EU, the euro currency, no-smoking ban, divorce, same-sex marriage, to name a few. We changed our PAYE system from the old tax tables and tax-free allowances to the current system pretty much overnight. To quote Obama, “yes we can” be progressive and radical. Remember that the proposed Basic Income of €10,000 amounts to only 55% of the average nett pay if you were on the minimum wage, so nobody will go wild on it. But it guarantees the ability to live frugally, without oversight or assessment by any State body or official. That has to improve one’s self-respect and, over time, it will allow every citizen to seek to pursue their preferred activities, paid and unpaid.

Once we guarantee this basic dignity and income to all citizens, then the State can continue to address its responsibilities to meet the needs of those who need extra, additional support – the homeless, the sick and the families affected by the additional cost of disability come to mind immediately!

The 2002 Green Paper quotes an article by Bill Jordan discussing the writings on Philippe Van Parijs (1992):

“Other commentators have argued for Basic Income as the only effective remedy for social exclusion, seeing means-tested social assistance schemes as are prevalent throughout the Developed World as creating a permanent underclass. A Basic Income system overcomes this problem by removing the poverty and unemployment traps, thus giving the excluded minority access to the market system of reward for individual effort, and secondly by giving everyone a universal share of resources on grounds of membership (citizenship), thus acting as a mechanism for including all in the common good. Seen in this light, Basic Income is a necessity to preserve democracy in the face of deteriorating social relations and withdrawal of participation by those who feel excluded”.

And that was written nearly 25 years before Brexit and Trump!

As a nation celebrating 100 years since the proclamation that promised so much, I submit that it is time for us to look at a better way of meeting the needs of our citizens – all of our citizens, equally and fairly and transparently. Let’s all start imagining . . .

 

References:

(1) Martin Luther King “Where Do We Go From Here: Chaos or Community” 1967

(2) Social Justice Ireland “Basic Income – Radical Utopia or Practical Solution?” Croke Park, 22nd November 2016 http://www.socialjustice.ie/content/civil-society-policy/social-policy-conference-2016

(3) Basic Income: Government Green Paper September 2002 http://www.taoiseach.gov.ie/upload/publications/1660.pdf

Author Bio

David Quinn is Managing Director of Pascal Software, is a member of the Board of Directors of Inclusion Ireland and is also a member of the Social Democrat party.

  • In a modern world, laws need to change and be made new to help people
  • People need freedom to decide what they want to do and have a good life
  • Rules should not just create barriers to prevent people marrying
  • It’s about support, information, rights, respect and happiness for people.

In an Ireland that twelve months ago voted for marriage equality, there is still a category of persons for whom having a relationship is not legally clear.

For people with intellectual disabilities, beside the usual challenges of meeting a significant other, there is an onerous legal shadow hanging over them in the shape of an archaic system and a more recent law that is nonetheless just as restrictive and prohibitive.

122 people with intellectual disability became Wards of Court in 2015 and if you are a Ward of Court, by virtue of the Marriage of Lunatics Act 1811, you may not get married. The intent of this Act is to ‘prevent the marriage of lunatics or any person under a phrenzy’.

For the majority of people who are made a Ward of Court, it is typically for financial reasons such as inheritance or an award of damages. The consequences of wardship, including this change in status, ensures that they cannot marry. This is often a source of anger, frustration and regret for individuals.

The good news is that this law is changing and being removed from our statute books when the long-anticipated Assisted Decision-Making Act 2015 commences, hopefully by the end of this year. Upon commencement, all individuals will be free to marry in accordance with law and provided they have capacity to do so. Marriage equality will be finally secured for all.

To marry you must have capacity and in general terms, capacity to marry is considered at a relatively low standard. As was decided in the famous Durham case “the contract of marriage is a very simple one, which does not require a high degree of intelligence to comprehend”, and the court described marriage as an engagement to ‘live together and love one another…. to the exclusion of all others”. This doesn’t represent a particularly high legal standard, but does represent a major life goal for many people.

If you are not married, have an intellectual disability and wish to have a sexual relationship then the law is not clear. In 1993, a law was introduced that was hailed as advancing the rights of LGBT persons by effectively decriminalising homosexuality, but was instead creating a new category of person to criminalise. The ‘mentally impaired’ person was created and that same act made sexual intercourse with that person a criminal act. There is no mention of capacity or consent; instead an abstract and arbitrary definition of ‘mental impairment’ is included that provides little clarity over who can and cannot enjoy a sexual relationship. There is one caveat to the law however, in that it does not apply to marriage, so a sexual relationship that could be considered criminal outside of marriage, is not criminal inside marriage.

As far back as 2005, The Law Reform Commission said that “a regrettable effect of (the law) is that, outside a marriage context, a sexual relationship between two ‘mentally impaired’ persons may constitute a criminal offence because there is no provision for consent”.

This tandem system is confusing and it is unfair. It does little to protect – as can be attested to by the paucity of case law. Where sexual assaults have occurred, they tend to be tried under mainstream sexual offences legislation, and that can prove challenging for survivors of abuse in giving evidence, something the 1993 Act was designed to avoid.

Two cases that were widely reported on in the media showed the inadequacy of the law from a protection perspective. In DPP V XY, a man was charged and acquitted of the oral rape of a woman with an intellectual disability. Because there was no evidence of intercourse, the accused was not charged under the 1993 Act and the Act he was charged under gave no regard to any mental impairment of a complainant. In his judgment Mr. Justice Barry White stated “It seems to me that the Oireachtas when they introduced the 1993 act did not fully appreciate the range of offences needed to give protection to the vulnerable”.

A second case, again widely reported on in the media involved a young woman with Down Syndrome from County Kerry. Again as the sexual act fell short of penetration there was no charge under the 1993 Act. The judge in the case made the decision that the woman was an unreliable witness and as a result the charges were dismissed.

Clearly the law fails in its intended protective elements, but concomitantly, self-advocates with intellectual disabilities report the restriction of their rights as adults to have intimate relationships including sexual intercourse. Through our advocacy work, Inclusion Ireland has experienced the negative impact of the legislation, with educators and advocates afraid to provide support or education to individuals with disabilities, for fear of encouragement of law-breaking.

Again, thankfully this 1993 Act is under review as part of Ireland’s ‘Roadmap to Ratification’  of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and it is anticipated that new legislation which more effectively protects, while also avoiding undue interference, will emerge before the end of the year.

Clearly the Criminal Law does not satisfy requirements of the UNCRPD and provides a barrier to people with disabilities enjoying relationships on an equal basis with others. Although the prosecutions under the 1993 Act are rare, the legislation has created a culture of fear and inactivity.

In terms of relationships, family planning and marriage, access to information and education can be a big challenge for many people with disabilities. People can be afraid to ask for support or information, doctors or other medical practitioners reluctant to provide services and other people who are in natural or paid positions of support may be afraid to offer information by virtue of the shadow of the criminal law. In June 2014, then Senator Katherine Zappone said that the law had created, a “chilling effect” where persons with intellectual disabilities within Irish society are fearful of forming relationships (The Irish Times, 10 June 2014).

Nonetheless, people with intellectual disabilities or extra support needs have identified relationships, sex, marriage and family life as important life goals for them. In a submission to the Law Reform Commission, the Connect People Network said “The law about sex and people with extra support needs is very important. The law affects some of the most important things in our lives”.

The UNCRPD requires States to take positive measures so as to ensure that people with disabilities have respect for privacy in family or home life (Article 22), and to take measures to eliminate discrimination in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others (Article 23).

In its report on Sexual Offences & Capacity to Consent, the Law Reform Commission commented that this “may be considered to have particular application to women, and …that all persons, including pregnant women, irrespective of their disability status, are entitled to have access to age-appropriate information and reproductive and family planning education”.

Additionally, the Commission took the view that “the provision of appropriate educational support… should be a pre-requisite to (testing) capacity to consent to sexual activity” and additionally that “education programmes should deal with privacy, intimacy, assertiveness, empowerment, relationships and the ability to identify abusive or exploitative situations”.

Through its advocacy work, Inclusion Ireland has encountered many people providing sexual education and training to people with intellectual disabilities who regularly cite fears about the law as a barrier to delivering good education. Educators are afraid that they are encouraging people to break the law.

Relationships in general can be hard for people with intellectual disabilities. Barriers exist in terms of socialising, loneliness as well as marriage and having a family. The recent report of the Intellectual Disability Supplement of the Irish Longditudinal Study on Ageing (IDS-TILDA) reported in 2014 that people with intellectual disability are generally single and without children or grandchildren. The same report noted that socialising can be difficult for people with disabilities, particularly those in institutions. Socialising tended to occur with staff or other residents. Almost half of adults involved in the IDS-TILDA reported feeling loneliness.

Further barriers exist with people with disabilities and their interactions with the public. Public attitudes towards people with disabilities having sexual relationships or founding a family are mixed. An Inclusion Ireland survey in 2008 found 98% of people believed that people with intellectual disabilities should have the opportunity to live as normal a life as possible. This is an exceptionally high number and represents a positive sign, but when more specific questions were asked the numbers began to drop. When asked about the right to marry, the number decreased to 80% and while this is still high, it means that one in five people do not believe that a person with intellectual disability should have a right that other adults have.

In the 2011 NDA Attitudes survey, approximately eight out of ten respondents agreed that people with vision, hearing or speech disabilities or physical disability have the same right to sexual relationships as the general population. However the number was significantly lower with people with learning disabilities or autism, with just 51% in agreement that they have the same right to sexual relationships as everyone else. Furthermore, support for people with intellectual disability or autism to have children if they wish was recorded at 38%.

It seems counter-intuitive that people would hold an attitude that people are entitled to a ‘normal life’ but that this would not include marrying or having a family or that people would have the right to marry but not to have children, yet successive surveys demonstrate that this is a prevailing view.

Clearly there is significant work to be done, not only in amending the criminal law and protecting people’s rights to relationships, but also in improving the visibility and acceptance of people with disabilities as having choice over their sexual agency, as partners, as spouses and as parents.

Author Bio

Sarah Lennon is Training & Development Officer at Inclusion Ireland .

Simon Duffy
  • Disability is not a tragedy; it is a fact of life.
  • Sometimes people are labelled as having a disability and you can’t see the real person then.
  • Self-directed support means putting people in control of their lives and this started in California. Now it is all over the world.
  • There are a few basic parts of Self-Directed Support: Rights/Freedom/Participation/Citizenship
  • Unfortunately, most governments still don’t treat disabled people as full citizens.
  • In the past, too much money was put into institutions.
  • The person themself are the best person to make decisions affecting them.
  • Institutions change slowly whereas the person or their family can try new things and make changes quickly.
  • Government is not the best tool to make peoples lives better.
  • Obstacles to Self-Directed Support include: Fear of change / Bureaucratic inertia / Poor system design / Fear of cuts.

Disability is not a tragedy; it is a fact of life. But often people’s experience of disability can be tragic. Disabled children and adults, all full of wonderful gifts and passions, can be treated as if the only thing important about them is their impairment. For too many people this leads to lives that are limited by low expectations and controlled by institutional care services.

For more than 50 years disabled people, their families and allies have been resisting these prejudices and working to close the institutions that control them. Out of these efforts many helpful ideas have emerged, and self-directed support is one of those. Self-directed support means putting people in control of their lives and of the support they need to live as citizens.

The first examples of this started in California, where people with physical disabilities were given individualised funding to employ their own personal assistants. They also developed a shared system of support, called a Centre for Independent Living, where people could work together and also provide additional services.

Over time this good idea spread, although it has developed differently in different communities. In Canada, people with intellectual disabilities and their families were early champions of these ideas. In Germany this model is the dominant way of providing support to older people. In the USA there have been successful pilots for people with mental health problems. In England the idea has spread into children’s, health and education services.

There is no one perfect system, and there is a lot of confusing jargon: personal or individual budgets, resource allocation systems, brokerage, support planning, supported decisions, individual service funds and much more besides. But at the most basic level, there are probably four key features to any decent system of self-directed support.

Rights – Everyone of us has human rights, and in a decent society those rights are respected and protected in law. The welfare state exists to protect people’s social and economic rights. For example, disabled people need a budget in order to get the help they need to contribute to society. It is very important that budgets are clear and fair, so people get enough to live their life.

Freedom – We all need freedom and the ability to control our own lives. For disabled people, this means they need to be able to control their own budget and make decisions about their lives. For people with intellectual disabilities and others, this also means having support from family or others to help people make the right decisions for their life.

Participation – We live life by playing a full part in our community. For this reason, disabled people must be able to use their money to join in, get a job, get a home, and to spend time with friends and family. So any personal budget should not just be for services – it is vital that it can be used flexibly and creatively.

Citizenship – The point of all self-directed support is to enable people to be citizens. It is the combination of rights, freedom and an ability to join into community life means that the person is not only recognised as a citizen, but also that they can make a vital contribution to their community and the wider world.

If you think about self-directed support in this way, you can see that it is not just some technical change to a system of services. Nor is it just a new system of shopping for services. Instead it is a way of reclaiming the citizenship of each disabled person – as a full equal.

Unfortunately, most governments still don’t treat disabled people as full citizens. Instead, most still preside over a paternalistic welfare system that tends to treat people as if they are objects. But this is not working well; governments are struggling to cope. So the good news is that governments can now be persuaded to change their systems towards self-directed support, because they can see this might be a much better way of organising things.

In the past, too much money was invested in institutional solutions (day centres, care homes, hospitals and prisons). But these systems don’t lead to the best outcomes for people; they are often wasteful or even damaging. However, when people are offered the chance to exercise more control then they can begin to change how things work for themselves, and this can lead to better outcomes.

It is not hard to see why self-directed support improves decision-making:

  • People usually know what works best for them and their families;
  • People often know best what is going on in their life and in their community;
  • People will quickly stop anything that is not working for them.

It is probably the last point that it is most important. There are many excellent social workers and well-intentioned professionals. They are mostly trying to do the right thing and make good decisions, in the person’s best interests. Once a service or solution is set up, they tend to move on to the next person. But real life isn’t like that: we change things all the time; we reject things that have stopped working for us; we try out new opportunities; and we learn from other people’s successes or failures.

In other words, when we take decisions away from people and from those who are close to them, then we end up locking people into systems and supports that don’t change quickly enough. But, if we give people the power to say ‘no’ and to try something different, then things can keep getting better. This helps explain why self-directed support consistently shows better outcomes for disabled people in international research.

The potential benefits of freedom and control are profound. For example, Jonathan is a young man with intellectual disabilities and a chronic health condition. For 3 years before he used self-directed support, he was in hospital for 150 days due to severe breathing problems. This was because the many people supporting him (nurses, teachers and support workers) were never able to concentrate just on him. When an illness began it was identified too late, and serious health problems followed.

In the 3 years after his family started to manage his budget (funded by social services, health and education) he spent only 2 nights in hospital – both times for elective dental treatments. He had a dedicated team of staff who worked with him, and instead of going to college, he got a job in the building trade. He now has two City & Guilds Qualifications. When health problems begin, they are nipped in the bud immediately.

Over a three-year period, Jonathan’s new services saved the NHS, local government and the education system over £100,000 in hospital stays, over £300,000 in residential care costs and over £100,000 in educational funding. Getting things right is good for people and for the system.

You can think of self-directed support as one part of a much bigger change needed to modernise the welfare state, support citizenship and strengthen community. Disabled people are not the only group who face discrimination and whose lives are unduly limited and controlled. You could even argue that most of us are living in a society that doesn’t really make the most of our gifts and talents.

We still expect government to solve complex social or economic problems; but many of these expectations are unrealistic. Governments can do some things really well; but there are many things that governments can’t do. Governments can’t lead our lives for us, they can’t bring up our children for us, and they can’t take care of our communities for us. This doesn’t mean government has no role, but rather that this role is to ensure that we each have the resources necessary to lead our own lives, care for each other and contribute to the wider community.

This change will not happen naturally or inevitably, and there will be many obstacles. Change will only happen when disabled people, families and allies organise to exert pressure on the system to change. In order to do this it will also be important to think about the likely future problems.

 

Fear of change – Many people, especially those running large organisations, fear change. They do not want to be accountable to disabled people and their families. They have good intentions, but they see no reason to give away power. Some families or disabled people may also fear change, because change is unpredictable. So it is very important to offer everyone a positive vision of the future. Change is necessary, but we must also respect people’s different perspectives and experiences.

Bureaucratic inertia – Even if people accept the need for change, there is always a danger that the bureaucratic system will undermine the possibility of meaningful innovation and creativity. There is a natural tendency for systems to impose rules and controls, often based on people’s worst fears, and in the process strip away the real value of self-directed support. A common observation in the international research is that systems with high levels of flexibility work best; but often it takes hard work to persuade the system to respect this need for flexibility.

Poor system design – All the research on self-directed support shows that it helps people improve their lives. But some systems are highly efficient and effective, while others are too expensive and break down. We may not think that it is a bad thing to spend more money; but unfortunately, if spending is uncontrolled and unplanned, then the new system will be closed down. The smart thing to do is design a system that is efficient; this help keeps the pressure on the system to improve.

Fear of cuts – Many people think that self-directed support might be a good thing, but that budgets will be cut and that it is easier to defend institutional services. Certainly there have been severe cuts in England (although these have targeted both services and budgets). However the underlying problem is not individualisation, it is the fact that social care is not valued by the wider public. Cuts target social care because disabled people are not seen as valued citizens and the system is not seen as relevant to ‘everyone’. This is the key problem advocates must face.

One of the most encouraging international developments is in Australia, where after intensive campaigning by disabled people, called Every Australian Counts, the government has backed an overhaul of its disability funding system. The new system is better funded and based on the principles of self-directed support. Advocates argued anybody might become a disabled person, and when this happens everybody should be able to play their full role as a citizen.

It seems to me that this is how we should approach the topic of self-directed support. It should not be treated as a special system, only relevant for a few disabled people. Instead we should try to revolutionise our approach to disability. We should be outraged when people do not have a meaningful right to contribute to our communities. We should build the case for self-directed support based on human rights and a vision of a world where everybody matters, and where everybody has a role to make the world a better place.

 

SUMMARY

Self-directed support is a way of giving disabled people control of their lives and their support. It started 50 years ago and it works very well in lots of different countries, but it has not really come to Ireland yet. If disabled people and families want to have more control over their lives then they will need to work together to challenge and change the old system. In order to do this, it will be necessary to help other people understand that disabled people have a right to contribute to the community as citizens, and that we are missing out if they don’t.

 

References

Cowen A (2010) Personalised Transition – Innovations in health, education and support. Sheffield, The Centre for Welfare Reform.

Duffy S (2006) Keys to Citizenship: A guide to getting good support for people with learning disabilities, second revised edition. Sheffield, The Centre for Welfare Reform

Duffy S (2013) Travelling Hopefully – best practice in self-directed support. Sheffield, The Centre for Welfare Reform.

O’Brien J & Mount B (2015) Pathfinders: people with developmental disabilities and the allies building communities that work work better for everyone. Toronto, Inclusion Press.

Murray P (2010) A Fair Start. Sheffield, Centre for Welfare Reform.

Author Bio

Dr Simon John Duffy is Director of The Centre for Welfare Reform, and Chair of the Housing & Support Alliance and policy advisor to the Campaign for a Fair Society. Simon is also an Honorary Senior Research Fellow at the University of Birmingham’s Health Service Management Centre. Simon also acts as the voluntary coordinator of Learning Disability Alliance England.