Ireland's Challenge, Ireland's Opportunity Briefing Paper for Political Manifestos

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November 2015

 

1.        INTRODUCTION

Every issue is important to those affected by it, but the issue of disability is vital to Ireland’s long term sustainability and international reputation. The policies and supports which government puts in place to contend with the challenges posed by disability will impact at some stage on every single family in this country. 

The Disability Federation of Ireland unequivocally maintains that this is the moment to fundamentally tackle disability exclusion, which has been at the heart of inequality and discrimination in our society for far too long. We believe that the wider disability movement and the many members of the public, who have continuously supported us, will be vocal in their insistence in the forthcoming general election that this issue must now be brought to the forefront of the political agenda.

The Disability Federation of Ireland is here setting out a coherent series of actions that of necessity must imbue and inform the social programme of the incoming Government. These action points are not an optional menu to be selected from piecemeal, but a comprehensive and interrelated series of measures that need to be delivered in their entirety.

There is a real belief that Ireland now stands on the threshold of creating a fairer and more inclusive society, where those living with a disability can contribute in a meaningful way. Hope and expectation has been mounting since Ireland signed the United Nations Convention on the Rights of People with Disabilities (UNCRPD) in March 2007.  It has been a long wait, but it should be acknowledged that Government has published a credible roadmap to achieve Ireland’s long overdue ratification by the end of 2016.   This is a critical opportunity.  The incoming Government must act quickly and decisively to bridge the gap of almost a decade between the signing of the UNCRPD and our anticipated ratification of this major international treaty.

In particular, it is imperative that the next Government prioritise the building of Ireland’s community disability services.  Our core message is that this vital work will require a whole of Government approach, which will involve deploying substantial resources in order to transform the way Ireland deals with the challenges posed by disability.  Disability was a major casualty of the recession. The reality is that significant investment in Government energy and finances will be necessary for Ireland’s disability services and supports to reach even an acceptable level of provision.

This is also a fundamental value-for-money issue.  As people live longer, the numbers of people acquiring a disability will continue to rise. If Ireland does not show the foresight to strongly invest in tackling disability now, we will inevitably end up squandering public money for decades to come.  Money will continue to be wasted on very poor and inappropriate services, resulting in diminishing outcomes for people with disabilities and equally for taxpayers. This disability inclusion programme must be seen as part of the public service reform agenda.

 

1.1    2016: The Challenge and the Opportunity

For almost a quarter of a century, Ireland has been on a journey.  It has been a journey that has often surprised and frustrated.  But it is also a journey that still holds out hope and expectation of a better and fairer Ireland. This journey began in 1993 when the then Government established a Commission on the Status of People with Disabilities. It is almost twenty years since this Commission published its landmark report, A Strategy for Equality, which contained specific recommendations to mainstream public services and to end the wrongful exclusion of people with disabilities from wider Irish society.

Undoubtedly, there is frustration that two decades on from the publication of A Strategy for Equality many of the report’s recommendations still need to be realised.  There is also a real sense of surprise that though many people acknowledge that Ireland radically needs to change the way it delivers its public services, so much remains unchanged. 

The twentieth anniversary of the publication of A Strategy for Equality coincides with two other significant events. 2016 will see the election of a new Dáil and a new Seanad and this provides a fresh opportunity for the next Government to place the rights of people with disabilities at the top of the political agenda. 2016 also marks the centenary of the Easter Rising, an event that was central to the creation of an independent Ireland and an event that still infuses the democratic and republican ethos of this State. The 1916 Proclamation inspirationally spoke of a new republic that would guarantee “equal rights and equal opportunities to all its citizens.” One hundred years on from the birth of our modern republic, people with disabilities and their families are asking that this egalitarian pledge be finally delivered upon.

Ireland is not a fair place for people with disabilities to live. This is a stark statement, but it is true.

If we are to truly honour the promise of equality in the 1916 Proclamation, having or acquiring a disability should not lead an individual or his or her family to poverty. Unfortunately, in today’s Ireland, it does. 

If we are to truly honour the promise of equality in the 1916 Proclamation, having or acquiring a disability should not lead to exclusion for an individual or his or her family. Unfortunately, in today’s Ireland, it does.

If we are to truly honour the promise of equality in the 1916 Proclamation, having or acquiring a disability should not undermine the opportunities or confidence of an individual or a family. Unfortunately, in today’s Ireland, it does.

The synergy of this milestone centenary in our nation’s history, a general election and a two decade long journey towards the implementation of A Strategy for Equality is a truly opportune moment for people and families, who live and struggle with the daily impact of disability, to strongly emphasis the need for the fulfilment of the Proclamation’s promise of “cherishing all the children of the nation equally.”

 

1.2    Disability is Ireland’s Issue

The achievement of this promise is something that should not concern just “the disabled.” This is, in fact, a promise or commitment that our republic must bestow on all of its citizens. The inclusion of people with disabilities and chronic illnesses in the circle of wider equality is a guarantee that all our families and all of our loved ones will someday benefit from.

There is not a fixed and separate group that makes up “the disabled.” Disability will inevitably impact on almost everyone at some stage in a person’s life. It is simply a part of the human condition. Some people experience disability from birth and others acquire a disability as part of life’s journey. Disability is often age related. Put simply, the likelihood of acquiring a disability or disabling condition increases greatly with age. Thankfully, with progress in social and health areas, Irish people are living longer than at any time before. Yet with this positive advance comes a sharp increase in the number of people living with a chronic illness or disability.

Ireland can deal with this unprecedented challenge by changing how we provide our public services and by promoting healthy and participative living. We must view this challenge as an opportunity to benefit everyone and to build an Ireland where more people can participate in work, family and community life.

The next five years are critical to our nation’s progress. Through the collective sacrifice, endurance and hard-work of our entire community, Ireland has been pulled back from the brink of financial disaster. The economy is out of crisis, it has stabilised and it is now growing strongly. Budgets have moved on from harsh cuts and a severe programme of austerity to modest increases in current spending and a targeted focus on renewing public services. As the economy returns to strength, jobless numbers have also substantially fallen. 

Disabled people want to contribute to the development and renewal of our country. Government needs to do much more to support employment opportunities and community participation for people living with a disability. As a society, we need to do more to support children and young people contending with a disability so that their horizons and opportunities are not limited by having a disability.

With those key societal building blocks of a flourishing economy and an expanding labour force now in place, there is significant scope to make substantial progress towards secure inclusive living for those dealing with the impact of disability. The recession hit everyone hard, but it was particularly harsh on people with disabilities, many of whom were already surviving on disposable incomes below the poverty threshold and who saw the vital services they depend on cut or abolished. It is an inescapable fact that people with disabilities in our community are in a far weaker position today than when the recession first took hold.

From the onset of the economic crisis, there has been a singular national focus on reducing the numbers on the live register. With Ireland enjoying in 2015 the fastest rate of jobs growth in the European Union, we urgently need a twin focus, which takes account of other pressing realities. The laudable and necessary ambition of securing full employment must continue apace, but in tandem with this Ireland also needs to address the urgent social need, for disability inclusion.

As Ireland sets out to renew its social infrastructure in the wake of a long period of austerity, it is important that the available funding is targeted at key areas where we can maximise the benefit from finite resources. The recession pushed people with disabilities further out onto the margins of Irish society and a fair, focused and efficient use of public money can bring these people into the circle of opportunity.

 

2.        DISABILITIY INCLUSION ACTION PLAN

This document focuses on a range of specific measures to improve the quality of life for people with disabilities. Essentially, we are calling on everyone in the political system to commit now to a range of measures which, irrespective of what party or political entities form the next Government, will drive progressive change and will enhance the level of inclusion and participation for people with disabilities in Irish society 

Determined action is required across three key domains.

Firstly, an Enhanced Governance Framework is urgently needed to provide public services that are flexible, that are responsive and that are person and family centred.

Secondly, Wider Public Service Reform must happen to deliver better value-for-money and ensure that everyone has the reassurance of knowing they will have the immediate support of first-class services, as and when they may need them.

Thirdly, there needs to be Delivery of Practical Social Inclusion Outcomes for People with Disabilities. This means delivering tangible improvements that bolster incomes and maximise education, employment and other inclusion opportunities for people with disabilities. This series of actions must equally focus on children and young people, adults of working age, and older people.

Enhanced Governance Framework

For this to happen, there needs to be a whole of government response to disability across our society. More than anything else, disability must no longer be seen and treated as an issue that concerns only “a sector”. Disability inclusion needs to be enthusiastically embraced across all Government departments and public bodies. To put disability equality at the core of the next Government’s work, the programme for Government must commit to, and immediately deliver on the following:

•      establish a Cabinet Minister for Disability Inclusion to drive and coordinate whole of government measures, including ratification and implementation of the UNCRPD;

•      establish a Joint Oireachtas Disability Inclusion Committee; and,

•      establish a Cabinet Disability Inclusion sub-committee chaired by An Taoiseach.[1]

This Enhanced Governance Framework will recognise that longer-term planning is critical, given the demographic changes[2] as well as the rising incidence of chronic conditions, which is one of the biggest health challenges facing the Irish health system[3]. Related to this is the need for measurement, monitoring and understanding of different illnesses, conditions, and disabilities across the life cycle. Data collection and analysis must be prioritised in support of service planning.

Wider Public Service Reform and Disability

The Disability Federation of Ireland is here setting out what it understands to be the minimum credible actions necessary for Ireland to meet its long standing commitments to disability inclusion. Many of these targets actually predate Ireland signing the UNCRPD, but they remain undelivered. The annual budgetary process must provide opportunities to improve individual incomes and to invest in public services. This will help to deliver progress in line with future commitments in the 2016 - 2019 Implementation Plan for the National Disability Strategy[4].

The Disability Federation of Ireland considers that Ireland urgently needs a strong focus on public service reform rooted in a new ethos that insists upon better value for money. Without this, progress will be too slow and resources will be wasted. This Disability Inclusion Action Plan can drive, at a practical and community level, public service reform.

It is not beyond Ireland’s capacity or sense of fairness to put in place public services that offer a guarantee to people with disabilities and their families that they will have speedy access to appropriate services and supports, especially when individuals or a family are going through the crisis of disability onset.

Delivery of Practical Social Inclusion Outcomes for People with Disabilities

People with disabilities are the largest minority group in Ireland and the only group that any one of us can become a member of at any time. There are currently almost 600,000 people living in Ireland today with a disability or a chronic illness. This represents 13% of the population of the country. Nationally, one in every eight people has a disability. If we are serious about equality, it is time this sizeable minority is brought in from the margins.

DFI are seeking a balanced programme to comprehensively address the outcomes that people with disabilities and their families require across the following interlinked elements: 

  

                                   

·         INCOME AND ACTIVIATION SUPPORTS for people with disabilities.

·         Resourcing of DISABILITY SPECIFIC SERVICES AND SUPPORTS that enable people with disabilities to live independently and with dignity.

·         Resourcing of the MAINSTREAM COMMUNITY INFRASTRUCTURE supports to ensure people with disabilities are able to access these on a par with every other citizen.

Simultaneous and coordinated actions are required under these three elements and across a range of critical themes. These actions will require cross-departmental working, by necessity, to provide comprehensive outcomes for people with disabilities. These actions are set out in the next section below.

 

2.1   Ensuring an Adequate Income

 

People must be granted an adequate income to live with dignity. Protection of basic payments does not equate with protection of basic income. The reality of living in Ireland with a disability at this time is masked by data gathering that does not take account of the extra costs associated with living with a disabling condition or chronic illness.

 

Disability Specific Services and Supports

 

Mainstream Community Infrastructure

 

2.1.1-Increase Disability Allowance by €20 to help support the income needs of people with disabilities as an initial measure

 

2.1.2-Deliver concrete actions to address the cost of disability within the first 2 years of the next government’s term[5].

 

 

 

 

 

2.2     Entry / Re-Entry to Employment

 

We know that about 40,000 people with disabilities would like to work if the conditions were right.[6] People who have never been in employment or have left a job because of a disability have been described as experiencing “labour market exclusion”[7]. Real opportunities need to be provided for people with disabilities to enter employment, and for those who have acquired a disability to return to employment.

 

 

 

Disability Specific Services and Supports

 

 

Mainstream Community Infrastructure

2.2.1 – Ensure the Comprehensive Employment Strategy and its actions are compatible with mainstream activation policies, e.g. Pathways to Work and that actions in mainstream activation policies / programmes have accessible options as well as making provision for specialist supports.

 

2.2.2 – Ensure that there is a ‘fit for purpose’ employer subsidy scheme, that is compatible with other employment supports.   

 

2.2.3 - Introduce a Disability Tax Credit, similar to the Blind Persons Tax Credit in Budget 2017.

 

2.2.4 - Provide for full eligibility to voluntary activation schemes including Momentum, to those on disability payments and include appropriate supports for participation.

 

2.2.5 - Make all Intreo offices and services accessible to people with disabilities by the end of 2016 ensuring staff have adequate training and time to effectively work with disabled jobseekers and their support personnel.

 

2.2.6 - Make the Youth Guarantee open to young people with disabilities and provide resources to support their participation.

 

2.2.7– Guarantee that people with disabilities are able to retain Personal Assistants to support their transition into work and for those in work to access a Personal Assistant.

 

2.2.8 – Guarantee that medical cards are awarded and retained on need, not on employment status.

 

 

 

2.3     Health and Social Care

 

Providing value for money in health and social care services means the focus must be on improved outcomes for people with disabilities, in terms of current expenditure.

 

 

 

Disability Specific Services and Supports

 

 

Mainstream Community Infrastructure

2.3.1 - Restore the budget for disability services to its former level prior to the recession, by increasing it by €50m each year from 2016 as an initial measure.

 

2.3.2 - Invest in a Community Services and Self-Directed Living Supports Approach[8] to make the current disability services programme ‘fit for purpose’.

 

2.3.3 - Meet the unmet need for the Personal Assistant service by increasing the budget by over €7 million each year from 2016 -2019, and increase Home Support Services by almost €10m each year.[9]

Within the first year of government, undertake a review on establishing the PA service on a statutory basis.

 

2.3.4 - Ensure timely access to rehabilitation in the hospital setting by developing in-patient rehabilitation services at national and regional level.

 

2.3.5-Commence the phased roll-out of Community Neuro-rehabilitation Teams (CNT) in each of the nine Community Health Organisations to be completed by the end of 2016.

 

2.3.6-Invest in long-term rehab specific services in the community to provide lifelong rehabilitation support in appropriate settings including residential, transitional and day rehabilitation services. 

 

2.3.7 – Incrementally invest in therapy services on a yearly basis to address the large unmet need for speech and language, physiotherapy, and occupational therapy.

2.3.8 - Grant medical cards based on a person’s medical needs, not on their income.

 

2.3.9 – Tackle the high costs of prescriptions charges, medicines, and hospital charges to offset the costs of disability and illnesses experienced by people with disabilities.

 

2.3.10 – Guarantee that all children and adults with disabilities and disabling conditions / illnesses can access adequate and affordable GP care. 

 

2.3.11 - Increase the number of GPs and associated health professionals working in primary care teams around the country.

 

2.3.12 - Invest in prevention interventions and policies tailored to the specific needs of different groups of people with disabilities as part of the implementation plan for the Healthy Ireland strategy. 

 

 

 

2.4    Education

 

Education is one of the most important functions of the state. Over the past decade, there has been significant change in terms of children and young people with disabilities’ access to mainstream schools. To meet families’ raised expectations for their children, additional investment is required to copper-fasten the commitment to providing an inclusive education for all students, at all levels in the education system, regardless of ability, age or difference—full or part time; and secondly, to maximise their future full involvement in employment and community participation.

 

 

 

Disability Specific Services and Supports

 

 

Mainstream Community Infrastructure

2.4.1 - Publish a comprehensive and robust implementation plan for the EPSEN Act 2004 within the first year of government. The implementation plan must align itself with the Outcomes Framework of the Progressing Disability Services for Children and Young People aged 0-18 years and the Better Outcomes, Better Futures. 

 

2.4.2 - Protect existing supports and resources to the Progressing Disability Services for Children and Young People, aged 0 – 18 years project, to ensure equity of access to education settings and services.

 

2.4.3 - Ensure people with disabilities who wish to work, can avail of labour market initiatives.

 

2.4.4 - Publish a comprehensive strategy for equity of access to further education and training (FET) for people with disabilities by end of 2017. This strategy must establish systems, supports and outcome targets to ensure people with disabilities have equal opportunities to access and participate in mainstream FET courses. 

 

2.4.5 – Immediately extend the funding supports for people with disabilities in education to part time students. 

 

2.4.6 - Ensure educational policy-making is informed by advances in universal design and technology in supporting people to participate in mainstream educational settings.

 

 

2.5    Housing

 

Inadequate housing in the community remains a significant barrier to community living, not only for people with disabilities moving out of congregated settings, but also for people with disabilities who are already living in inappropriate situations in the community. Many people with disabilities continue to live in inappropriate settings in the community, including congregated settings and nursing homes. Access to adequate housing is a basic right that underpins one’s sense of dignity, and inclusion, and must be provided on an equal basis with others. 

 

 

Disability Specific Services and Supports

 

 

Mainstream Community Infrastructure

2.5.1 – Access to the Housing Adaptation Grant Scheme has been severely restricted even though keeping people in their own homes is an agreed policy priority. At a minimum, provide for a level of funding that enables every eligible applicant receive the grant, in a timely manner[10]

 

 

2.5.2 – Ensure proper planning from the outset, by providing local authorities with guidance on developing accessibility briefs, to be required for all new build and major refurbishment projects, that respond to the unmet housing need on the waiting lists.

 

2.5.3 - Introduce a funding stream in the budget to cover the additional costs that may be necessary to make new build and acquired social housing units suitable for those on the waiting list with mobility impairments.

 

2.5.4 - Appropriate housing often requires personal supports to enable independent living.  Introduce a contingency fund so that no one has to turn down an offer of social housing because the personal supports that they need are unavailable.

 

2.5.5 - The private rented sector can suit some people with disabilities but access is difficult. Provide for discretion on rents so that those requiring extra space or a particular location are not excluded.

 

2.5.6 – The National Housing Strategy for People with a Disability runs until 2016. Provide a Strategy with key aims and programme of action for the next 5 years. 

 

2.5.7- Restore capital expenditure for housing units for people with disabilities to pre-recession (2008) social housing levels over the next government’s term.[11]

 

2.5.8- Explicitly include priority actions identified in the National Implementation Framework for the Housing Strategy for People with a Disability in the Social Housing Policy strategy.

 

2.5.9 – Collect disability specific data in relation to housing allocations to ensure proper planning.

 

2.5.10 - Ensure the Scheme to Support National Organisations (SSNO) does not exclude the essential services provided by disability organisations in the community.

 

 

2.6    Transport

 

Access to transport is critical for people with disabilities living across the country, who wish to participate and contribute to their communities. People with disabilities should not be further disadvantaged by transport barriers.

 

 

Disability Specific Services and Supports

 

Mainstream Community Infrastructure

2.6.1 – Ensure that the Health (Transport Supports) Bill is included in the legislative programme for early 2016, and that the criteria for the new transport scheme are not overly restrictive, excluding people who have a genuine need. 

 

2.6.2 Ensure that any new transport subsidy scheme provides for people with disabilities’ mobility needs, including those who would have been eligible for the Motorised Transport Grant and Mobility Allowance Schemes prior to their closure.

 

2.6.3 - Ensure that 60 – 70% of the national taxi pool is fully accessible to people with disabilities by 2017.

 

2.6.4 - Disability proof government contracts on taxi services to ensure they are completely accessible.

 

2.6.5 – Address the inaccessibility of public transport in rural areas.

 

2.6.6 - Invest in accessible buses with easily discernible timetables, as well as accessible bus stops for rural areas.

 

2.6.7 - With regard to rail services, ensure that lifts are maintained in proper order, that ramps are available, and that staff, who have been trained, are available to assist people with disabilities in all stations. 

 

 

2.7    Communication and Information

 

Disability Specific Services and Supports

 

 

Mainstream Community Infrastructure

 

 

2.7.1 - Increase portrayal of and participation by persons with disabilities in mainstream media, as progress to date has been too slow.

 

2.7.2 - Update the Public Sector ICT Strategy to highlight the importance of accessibility of ICT services.

 

2.7.3 - Ensure that public bodies use Plain English in communications to the general public, and produce essential communications in Easy to Read format.

 

2.7.4 - Ensure that all web service and applications can be used by people with disabilities.

 

2.7.5 - Action is needed by the Department to guarantee equal access to electronic communication services for people with disabilities[12].

 

2.7.6 - The status of ‘Guidelines’ for broadcasters should be stronger than just a ‘statement of intent’.

 

3.        CONCLUSION

The focus of our next Government must be to ensure that our public services provide real value for money, that they truly serve all the public, that they leave no one behind and that they maximise the possibilities of people with disabilities participating fully in employment and in family and community life. 

In the forthcoming election, the Disability Federation of Ireland will be giving the public the opportunity to support parties and candidates pledged to end discrimination for people living with disabilities.  We will be asking people to vote to make Ireland fair.  We want the next Government to be firmly committed to disabling inequality and to providing equal rights and equal opportunities for every single person in our nation. 



[1] These measures will provide a comprehensive framework for the implementation of a meaningful Disability Inclusion Programme and they will build on significant progress to date, including:

·         the provision in the Cabinet Handbook that all legislative and policy matters must take account of their impact on disability;

·         the 6% minimum employment quota of people with disabilities in the public service;

·         using Departmental Strategy Statements, to focus disability inclusion within the Department and in its engagement with other Departments;

and,

·         the recently enacted "public sector duty" obligation, in Section 42 of the Irish Human Rights and Equality Commission (IHREC) Act, 2014, which places an emphasis on the role each Government department must play in promoting equality human rights for people with disabilities.

[2] CSO’s population and labour force projections 2016-2046 calculates 1.45 million people aged over 65 in 2046 compared with 532,000 in 2011, 22% of the population compared with 12%. Further projection that those over 80 will almost quadruple from 128,000 to 485,000 2011-2046.  While the old age dependency ratio (the ratio of those aged 65 years and over to those aged 15-64) is projected to rise to 30 by 2031.

[3] At present, 40% of the population in Ireland report a chronic condition and this is expected to escalate as the population ages and as risk factors such as obesity and sedentary lifestyles increase. Three out of every five people aged over sixty years have at least one chronic condition, and this increases with age, three quarters of people aged over 75 years have a chronic condition. Chronic conditions are also responsible for a significant proportion of premature deaths.

[4] The consultation process for the National Disability Inclusion Strategy is on-going at present.

[5] The living standards of people living with a disability are affected by costs associated with their disability. Official poverty statistics do not take these costs into account in their measurements.

[6] Data from the National Disability Survey (2006) demonstrated that 37 per cent of people with disabilities who are not at work would be interested in a job, which corresponds to over 40,000 people who wish to be more active in the labour market.

[7] Watson, D., Banks, J. & Lyons, S. (2015) Educational and employment experiences of people with a disability. NDA

[8] A Self-directed Supports approach involves a significant shift for the whole system of health and social care. Supported people will be given a choice as to how much control they want to have over their budget as well as choice over how their support meets their individual outcomes. This creates opportunities for new ways of working and providing more innovative models of support, however, there are challenges in adapting culture, workforce and systems and managing this transition.

[9] In excess of 291 people are listed as awaiting PA services and 376 are awaiting Home Support services, based on the National Physical and Sensory Disability Database report (NPSDD 2013) and HSE data. Figures based on an average wage of €23 per hour for PA and Home Support Services.

[10] Funding for the Housing Adaptation Grant Scheme was cut by a staggering 56% from 2010 to 2014.

[11] CAS funding dropped from €160m in 2009 to €46m in 2014. CAS has played a vital role in provision of housing for people with disabilities – 3,679 units delivered as recorded in 2012 Irish Council for Social Housing survey.

[12] Cursory attempts to satisfy requirements of the Universal Service and Users’ Rights Art 31 (a) have been too narrowly interpreted and implemented.

 

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