Disability Federation of Ireland’s Review of the National Disability Strategy Implementation Plan 2013 - 2015

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13th July, 2015

FOREWORD

This is the Disability Federation of Ireland’s Review of the National Disability Strategy Implementation Plan (NDSIP) 2013 – 2015. DFI is represented on the Disability Stakeholders’ Group, which has a role in monitoring the implementation of the NDSIP.

I would like to draw your attention to the fact that since the Plan was published in July 2013, there has been little measurable progress, and that the process is not working as it was intended. To illustrate this point, key issues are listed below, and are discussed in more detail in this paper: 

  • Impact of budgetary decisions – there has been a steady reduction in the kind of flexible supports that facilitate choice, autonomy, and independent living for people with disabilities.
  • Key performance indicators –timelines are weak and inadequate and do not allow for the measurement of progress.
  • Of the 91 named actions, 62 have the target completion date as ‘ongoing’.
  • 30 of the 62 actions within the NDSIP tagged as ‘ongoing’ are also referenced in one or more of the six Departmental Plans, prepared in 2006.
  • Lack of commitment to engagement by the Departments in the consultative mechanism as set out in the NDSIP, i.e. Departmental Consultative Committees.
  • Systematic failure to implement cross departmental working.
  • The Plan is not being implemented as part of the wider mainstream policies, nor does it take account of the growing demographic need in disability.
  • There are obvious gaps in the Plan in relation to supporting community services such as Personal Assistance, and cost of disability.

The lack of commitment to support the implementation of the NDSIP is demonstrated by the points above, which are symptomatic of the clear lack of ambition to date by the Government to ensure that people with disabilities can fully participate across all areas of public life and in the community. This lack of ambition for people with disabilities contrasts with the commitment demonstrated for other mainstream policies, for example, the multi-annual plan for jobs - Action Plan for Jobs.

Implementation experience to date does not give DFI any reassurance in terms of the Plan’s capacity to provide a planned framework to progressively achieve the social, cultural and economic rights set out in the UN Convention on the Rights of Persons with Disabilities.

If this Plan is to prepare our State for the ratification of the UN CRPD, cuts to services and supports need to be brought back to pre-recession levels as a start, and key areas that support independence, choice, and participation need to be addressed/reformed including cost of disability, labour market activation, and transport.

In June the UN Committee on Economic, Social and Cultural Rights published its concluding observations in relation to the Irish State’s record under the International Covenant on Economic, Social and Cultural Rights. Of note in these observations, is that disadvantaged groups, including people with disabilities have been disproportionately affected by austerity measures in the areas of social welfare, housing, health, and education. They also noted that there is no human rights based approach to assessing the impact of austerity measures before or during their implementation.

The NDSIP 2013 – 2015 is the commencement of a 10 year plan (2013 – 2022) to fully implement the National Disability Strategy. Ireland has officially been out of recession since the end of 2013. There should have been a marked improvement in the Plan’s progress by this stage. It is reasonable to expect that the NDSIP should have the capability to address the issues highlighted here and set out in the review.

Work is progressing on the development of a new plan to cover the 2016 to 2019 period. Following this plan, there are only three years remaining in which to achieve full implementation of the National Disability Strategy as envisaged by this Government.

Without a radical and committed up-scaling of ambition and resourcing of the NDSIP by Government, along with a rigorous “whole of government” implementation approach, people with disabilities and their families will have been left out of the post-recession 'recovery'.

John Dolan
Chief Executive
Disability Federation of Ireland

INTRODUCTION

The Disability Federation of Ireland (DFI) works for the interests and the expectations of people with disabilities to be fully included in Irish society. It is an umbrella body, comprising organisations that represent and support people with disabilities and disabling conditions. There are over 120 organisations as affiliates or associates, of DFI. DFI also works with a growing number of organisations and groups around the country that have a significant disability interest, mainly from the statutory and voluntary sectors. DFI operates on the basis that disability is a societal issue and so works with Government, and across the social and economic strands and interests of society, to enable people with disabilities to exercise their full civil, economic, social and human rights.

In this paper DFI will provide a critique of the implementation of the National Disability Strategy Implementation Plan (NDSIP) at this stage of its implementation, when it is in its third and final year [Source] . We would like to acknowledge the developments in national disability policy which have taken place so far over the life of the NDSIP. The development of working groups to progress the Value for Money programme gives the opportunity for the statutory sector, the community and voluntary sector, and people with disabilities to work together to ensure that the work being progressed is cohesive, and comprehensive. DFI is represented on all of the six working groups. Likewise, the publication of the draft standards for New Directions is a positive step towards a sustainable and appropriate day service programme.

This critique will firstly evaluate the plan in the context of the wider social and economic climate, and the decisions made within that context. Next, it will focus on the processes that were intended to drive the implementation of the Plan. Finally, it is our intention to explore specific policy areas in the context of social services and supports needed by people with disabilities to live independently in the community. 

SECTION 1: THE SOCIAL AND ECONOMIC CONTEXT

The National Disability Strategy Implementation Plan (NDSIP) was published on 29th July 2013 at a time of considerable economic and fiscal change, and within the context of significant public sector reform. It is fair to say then that the Government set these targets in the knowledge that they were attainable during the current economic climate. This was reinforced by the then Minister for Disability, Equality, Mental Health and Older People, Kathleen Lynch, where she said

“We know there are many challenges in the current economic climate, but equally there are huge opportunities and momentum further to new policy directions approved by this Government [Source]

DFI, people with disabilities and their families therefore had a reasonable expectation that at the end of the implementation of this three year plan, they would be better off than they had been before within the context of full implementation by 2022 (ten year cycle). [Source] In keeping with the high level goals and objectives of the Plan, it was reasonable to assume that the standard of living of people with disabilities (which is already considerably lower than the general population) would not further deteriorate over the lifetime of the Plan and would in fact, improve as a result of its implementation.  

It is clear to DFI that the implementation plan is divorced from the social and economic situation of people with disabilities in the community at this time. The latest SILC results for 2013 have shown that 53% of those not at work due to illness or disability experienced enforced deprivation [Source] . While income inequality as a whole has increased over the course of the economic downturn, it has affected people with disabilities to a much greater extent.

There continues to be a large disconnect between ‘what is said’, reflected through the NDSIG high level goals and objectives, compared to ‘what is actually done’. It is clear that the decisions made by Government have been at odds with the commitments made through the NDSIG and wider policy commitments. In particular, budgetary decisions have had a significant impact in pushing people with disabilities further into poverty and disadvantage.

The economic downturn is not the sole reason for the lack of progress in achieving targets set out in the NDSIP. In this regard, Ireland officially came out of recession in September 2013 [Source] . The worsening situation of people with disabilities is a cultural and political issue as much as an economic one. Disabled people have always been less well-off, the acknowledgement of which spurred the UN to adopt a convention specifically related to disability [Source] . Similarly, Ireland launched the National Disability Strategy in 2004. The NDSIP should be viewed as a programme supporting cultural change, as attitudes and culture are a serious barrier to its successful implementation. Health and social outcomes for people with disabilities have deteriorated because at a political level, decisions were made to cut vital supports and services for disabled people. It was seen as acceptable to do this. The lack of priority accorded to the NDSIP, was evidenced in January 2013, when the Minister for Jobs, Enterprise, and Innovation and the Minister for Social Protection met with the Taoiseach and Minister of State, Kathleen Lynch with regard to the Comprehensive Employment Strategy (CES), the outcome of which was that neither department would take responsibility for the development of the CES, within the structure of the NDSIP.

Impact of Budgetary Decisions on Progressing the NDSIP

To date, and during the life of this Plan, there has been a steady reduction in the range of flexible supports that facilitate choice, autonomy and independent living for people with disabilities. DFI have had honest engagement with the structures and processes set out in the NDSIG, however, the contradictory approach in terms of the regressive policy measures introduced over the last number of years has retarded progress. The ‘regression effects’ on people with disabilities arise from this Government’s policy approach [Source] and from specific policy decisions e.g. in relation to the Mobility Allowance and the Motorised Transport Grant. Statements that the leaders of Fine Gael and Labour made that people with disabilities were their first social justice priority during the final pre-election leaders’ debate have become broken promises [Source] . This is demonstrated by the extensive range of cuts to supports and long waiting lists for services that are critical to ensuring an adequate living for people with disabilities in their own home and community. These cuts have been made in the context of a changing demographic outlook with increasing demand for services based on the fact that people with disabilities are living longer.  Below are just an example of some of these cuts.

Funding Cuts

  • Cuts in HSE funding for disability services over the period from 2008 to 2013, of 9.4%. [Source]
  • A total of 1,103 people with disabilities on a waiting list for physiotherapy. [Source]
  • A total of 674 people with disabilities waiting for occupational therapy services. [Source]
  • A total of 366 people with disabilities waiting for speech and language therapy services. [Source]
  • A growing waiting list for Personal Assistant services (207) and home help services (296). [Source]
  • Reduction in the weekly Disability Allowance and the weekly Carers Allowance by almost 8% (€16.30) each.
  • Axing of the Mobility Allowance and the Motorised Transport Grant in February 2013.
  • The Housing Adaptation Grant scheme’s funding was cut by 56% from 2010 to 2014. [Source] Restrictions to eligibility introduced in 2014.
  • There has been a loss of over 1,200 staff from mental health services since 2008. Staffing levels are currently only at 77% of what was recommended in A Vision for Change, and just at over 50% in child and adolescent mental health services of what was recommended.  

Cuts in mainstream supports from successive budgets between 2009 and 2014 included: [Source]

  • Withdrawal of discretionary medical card during a review of all cardholders in 2012.
  • Fuel allowance payment reduced by 18.7% (€120) per annum.
  • The Drug Payment Scheme threshold was increased by 37% (€54) per month.
  • Increased prescription charge for medical cardholders fivefold to €2.50 per item. Increased the monthly prescription cap threshold for families by 22% to €25.
  • Abolished telephone allowance and the Bereavement Grant.
  • Replaced the health levy and income levy introduced in Budget 2009 with the Universal Social Charge in Budget 2011. This amounts to approximately €1000 per year for a person earning the equivalent of the living wage [Source] .
  • Disability Allowance, Blind Pension, Invalidity Pension, and Carer’s Allowance cut by an average of 8% from 2009. Budget 2015 did not increase primary social welfare rates which means, in effect, a cut in their real value due to increases in prices, an average increase of 5.1% from 2010 until May 2105, Consumer Price Index (CPI).
  • Child Benefit reduced by 21% (€36) per month for the 1st and 2nd child, and by 36% (€73) per month for the 3rd child.
  • Rent supplement minimum contribution has increased by 53% (€16 per week) for a single person and by 60% (€22 per week) for a couple.
  • Made maternity benefit taxable.
  • Discontinued the Cost of Education Allowance.

For DFI and our affiliate organisations the most difficult cuts have been those that directly impact on people with disabilities’ ability to live independent lives. For instance, in August 2012 this Government had to make a U-turn after people with disabilities held an overnight protest outside Government buildings over the decision to cut funding. The €10 million cut would have closed the service for the last quarter of the year. While these particular cuts were revoked, there is still a substantial level of unmet need with regard to this type of support. People with disabilities have reported to us that it is very difficult for those who acquire a disability or whose disability deteriorates to get additional hours. At the same time, we are seeing more people with disabilities being discharged from hospitals and being placed in nursing homes, which are outside the auspices of the ‘congregated settings policies’. On the one hand, health and social care policy is supporting people to move out of institutions, while at the same time, people with disabilities are being inappropriately placed in nursing homes [Source] .  

On the 26th February 2013 (which was within the life of this Plan) there came the sudden and shocking announcement that the mobility allowance and motorised transport grant were to be abolished on foot of a Government decision. In the case of the mobility allowance, the Ombudsman drew the attention of the Department of Health to the fact that the upper age limit was illegal in February 2009. Successive governments, however, failed to address the problem. The motorised transport grant and mobility allowance were effective cost of disability measures, however over two years later there has yet to be any announcement on the new provisions being devised by this Government. This has left those in receipt of mobility allowance uncertain about the future of the scheme and afraid to take up work for fear of losing their entitlements. Other individuals, who prior to the cuts would have been eligible, have had to absorb the extra mobility costs associated with their disability. This comes on top of the additional attrition of seven consecutive budgets that have added to their financial hardship. 

The withdrawal of the discretionary medical card was another cost cutting decision by the HSE that had a significant negative impact on many people with disabilities and their families and took place within the lifetime of the current NDSIP. For many people with disabilities, the costs associated with their condition- including general medical services, therapies, transport, and the expense of medical aids and appliances- compromise their capacity to meet other basic costs of living. Some people with acute medical conditions or lifelong conditions including intellectual disabilities lost their medical card as an outcome of a review which took place between 2012 and May 2014 [Source] . Following our campaign, DFI expressed relief that these cards were reinstated. In addition, DFI noted the announcement by Minister Leo Varadkar and Minister Kathleen Lynch with regard to the series of measures to reform the Irish medical card system. The challenge now facing the HSE and the Government is to deliver on these recommendations to ensure that the lives of the almost 600,000 people with a disability in Ireland, and their families, are made more secure and the supports they need are provided on a timely basis.

A final example of the contradictory policies by this Government came in the form of cuts in funding to 23 disability and caring organisations through the Scheme to Support National Organisations (SSNO) [Source] . These grants were used to finance – sometimes partially, sometimes exclusively – essential services in the community, including family support work, primary and acute health services, advocacy services, national help-lines, early intervention services and information provision.

The decision of where to spend public money reveals exactly where the Government’s priorities lie. In the same week that one of the Government’s departments decided to cut approximately €1.2 million in funding to the 23 disability organisations, the Central Statistics Office (CSO) announced that Ireland’s balance of payments current account had a surplus of €960m for the first quarter of the year. Not only did these events take place in the same week, but in addition then Minister for Health Dr. James Reilly launched the Rare Disease Strategy, which aims to create a “joined up model of care” for patients.

Following a campaign by DFI and the Neurological Alliance of Ireland, the SSNO funding was restored to the 23 organisations for the period of one year. It was subsequently announced on 25th May, 2015, that the funding would be reinstated to these organisations for another year. While DFI expressed its relief at this decision, organisations affected will face another year of uncertainty as a permanent solution to the chronic underfunding of disability services and supports has not been addressed, to date, by the Government.

This Government’s National Disability Strategy Implementation Plan states that disability is to be understood as a cross-cutting issue, and one that requires the proofing of decisions across Government departments. The decision to cut funding from such a large number of disability-based organisations served to highlight how this system is clearly not working. It also shows how a lack of “joined-up-thinking” at Government level negatively impacts on the communities and services available. Furthermore, DFI has repeatedly called for the appointment of a senior Minister for Disability Inclusion, bringing disability issues to the Cabinet table and safeguarding core services in the sector. Neither in intent or action does our Government understand that disability is a societal issue. All of the examples in this section demonstrate how divorced the NDS is from the heart of decision making at Government level, making it a separate entity rather than an overarching strategy. It is both unsustainable as a response and unacceptable to people with disabilities. 

SECTION 2: A REVIEW OF NDSIP STRUCTURE AND PROCESSES

The NDSIP is intended to set out the progress to be achieved over the three year period 2013 to 2015 in order to implement the National Disability Strategy. It is also the first cycle of a ten-year plan. However, one cannot ignore the half year delay in the publication of the Plan, demonstrating the lack of clear priority given by the Government to the strategy and its implementation. The delay in publishing the NDSIP in January 2013 was to facilitate the inclusion of the Comprehensive Employment Strategy in the plan [Source] . Yet it was published in July 2013 without the CES and in June 2015 it has still not been agreed by Government. 

In addition to this serious delay, DFI and others have emphasised on a number of occasions that the timelines for achieving the various Departmental actions are too weak or inadequate, with the term ‘ongoing’ being overly used. For instance, of the 91 named actions, 62 have the target completion date as ‘ongoing’, but when others state ‘ongoing over the life of the plan’ then those marked ‘ongoing’ are not committed for delivery by the end of 2015. There has been no progress report from the Government on the NDSIP and in fact it was the NDSIG who called for a mid-term review of the NDSIP in March / April 2014, which has not yet been completed. This situation starkly contrasts with the monitoring mechanism set up for other Government plans. For example, the Action Plan for Jobs, is a multi-annual plan and there are four progress reports completed each year providing an update on measures due for completion in that period, as well as on measures described as ‘ongoing’.    

DFI have also reviewed those actions in the NDSIP that were simply ‘lifted’ from previous Sectoral Plans [Source] and the length of time they have been ‘ongoing’.  In fact, 30 of the 62 actions within the NDSIP tagged as “ongoing” are also referenced within one or more of the 6 Departmental Sectoral Plans as prepared in 2006 as a result of the Disability Act 2005 [Source] . Ten years after the enactment of the Disability Act 2005, the Government have not set measurable targets to ensure progress is made in the implementation of the National Disability Strategy. One cannot accurately evaluate and capture the progress on any of these actions, without some kind of timeframe. In addition, where an action has been achieved, Departments need to look not just at maintaining it, but also how to build on that improvement. Table 2 below presents some of the 30 actions that have appeared as ‘ongoing’ in Sectoral Plans and are repeated as ‘ongoing’ in the NDSIP.

Ongoing Actions from Sectoral Plans and the NDSIP

Ongoing Actions from Sectoral Plans and the NDSIP
NDSIP Sectoral Plan

Ensure delivery of disability and mental health awareness training to staff, particularly frontline staff, including through NDA e-learning training module.

Dept. of Social and Family Affairs 2006

Ensure appropriate public complaints procedure is in place for dealing with complaints under the Disability Act and right of appeal to the Ombudsman.

Dept.  of Enterprise, Trade and Employment 2006

Ensure websites are accessible to people with disabilities.

Dept. of Communication 2006 (as ongoing concern to assist all other departments)

Ensure persons with disabilities receive supports and services needed to access housing.

Dept. of Health 2006
Dept. Of Environment, Heritage and Local Government 2006 (6 actions on housing included)

Ensure input of disability perspective on service user groups in place.

Dept. Of Environment, Heritage and Local Government 2006

Works to ensure achievement of minimum of 3% of employees in the public sector are those with disabilities and effective support policies in place, including career progression policies.

Dept.  of Enterprise, Trade and Employment 2006
Dept. of Social and Family Affairs 2006

Departmental Consultative Committees

There has been a demonstrated lack of commitment to engagement by Departments to the consultative mechanism as set out in the NDSIP. The Disability Stakeholders Group raised this issue in a letter to Minister Kathleen Lynch, on the 24th March, 2014. This was followed by a letter to the Taoiseach, on the 25th April, from Minister Lynch, using the mechanism of the Cabinet Committee on Social Policy outlining her concern that the NDSIP process would be jeopardised unless the necessary structures were put in place and operating together.

In June 2015, consultative committee meetings have only been established by the Departments of Education and Skills, Health, Social Protection and Transport, Tourism, and Sport. See table 3 below:

Departmental Consultative Committee as at November 2014.

Departmental Consultative Committee as at November 2014
Department

Committee established

Name

No. of meetings since July 2013

Arts, Heritage and the Gaeltacht

To be established

 

 

Children and Youth Affairs

To be established

N/A

N/A

Communications, Energy and Natural Resources

Yes

Disability Consultative Committee

0

Education and Skills

Yes

Consultative Committee on the National Disability Strategy

0

Environment, Community and Local Government

Yes

Disability Consultative Committee

0

Health

Yes

Disability Advisory Committee

1

Jobs, Enterprise and Innovation

To be established

N/A

N/A

Justice and Equality

To be established

N/A

N/A

Social Protection

Yes

NDSIP Disability Consultative Committee

1

Transport, Tourism and Sport

Yes

Accessibility Consultative Committee

3

Source: Mid-term review of National Disability Strategy Implementation Plan
Summary of progress to date, NDA - Synthesis Report of progress reported Nov 2014

It is possibly the clearest example of the attitude across government to the implementation of the NDS that the setting up and operation of the consultative committees has largely not been commenced while we are nearing the end of the 3 year cycle for this plan. The stated commitment was that the Departmental Consultative Committee meetings would be the fora where the detail in the implementation of actions, in accordance with key performance indicators, would be examined and any issues addressed. The poor record to date in terms of the establishment of Consultative Committees and the number of meetings held speaks volumes in terms of Departmental commitment to delivering real and meaningful improvements in the lives of people with disabilities.

Lack of Ambition for the Overall Plan

The absence of completion dates not only makes the Plan impossible to monitor in terms of measuring progress, it is also symptomatic of the clear lack of overall ambition by the Government to ensure that people with disabilities can fully participate across all areas of public life and in the community. This lack of ambition is also borne out by the fact that the NDSIP does not include many of the priority actions DFI proposed for inclusion during the drafting process for the Plan. See Section 3 for further information.

Monitoring of the NDSIP across Government Departments

DFI have been committed to working with the NDSIG and officials to ensure that the Implementation Plan can make some difference in the everyday lives of people with disabilities. We now have serious concerns for its implementation in that cross departmental working is not being achieved. There is a systematic failure to coordinate and monitor the work of the various Departments. In fact, even the roll out of the consultative committee structures was delayed until the DSG put pressure on the Minister to have them established. The process of having to remind the Government and its departments to live up to its commitments in March 2014 is unacceptable. Furthermore, despite assurances that the Plan would be a “live document”, this is clearly not the case. No new actions have been added despite the reference in the existing text that;

"… if it is agreed by the NDSIG during the monitoring process, that a new action needs to be considered, which due to new circumstances was not apparent during the drafting process, there will be a process to allow for this action to be brought forward”.

Planning for Future Needs: Demographic Pressures and Chronic Illnesses

There is no indication that the NDSIP is being rolled out as part of the wider mainstreaming policy agenda or even as a well thought out and planned strategy that takes into account the growing demographic need in disability. We know that the incidence of disability accelerates with age . If the rate of disability for those aged 60 to 64 years was to remain the same (22.3% in Census 2011) the numbers of older people with disabilities would increase by 18% up until 2021, and by a further 11.6% in 2031 [Source] .  Approximately 72.3% of those aged 85 years and over have a disability and their numbers would increase by 19% (2011 – 2021) and a further increase of 22% in the period 2021 – 2031.

Furthermore, people with chronic conditions and disabilities such as down syndrome, cystic fibrosis, muscular dystrophy and spina bifida are living into adulthood and old age and this must be taken into account in planning the health budget. The life transitions from childhood to adulthood, and from adulthood to older age should be opened up for discussion and put on the agenda for future meetings and action planning of the NDSIG. While, these transitions have a cost implication for the State, in particular for health and social welfare budgets, they can be minimised if work is done now particularly in areas such as health care, community supports, employment, transportation, and telecommunications. In addition, public health and timely clinical interventions and self-management can keep people well and contributing to society; they also minimise the risk of secondary health conditions and premature ageing among young adults with disabilities. 

SECTION 3: SPECIFIC POLICY AREAS

Overall, there are many key policy areas that could have yielded significant outcomes for people with disabilities but were not included in the NDSIP. These are discussed in the sections below and include existing community services and supports, cost of disability, and Personal Assistance.  

Health

The lack of ‘health actions’ is noticeable across the NDSIP making it difficult to accurately evaluate the extent to which health services are meeting or not meeting the needs of disabled people. Health and social care needs that are not met do not disappear; they worsen and cause people unnecessary suffering in the meantime. A functioning and supportive health services infrastructure is absolutely necessary if any of the High Level Goals outlined in the NDSIP are to be achieved in the lifetime of this plan. Health and well-being are the cornerstone for participation by people. In the area of health, it is more about what the plan ‘does not say’ as it is about ‘what it does say’.

There is no priority given to the important role played by existing community services and supports funded through the HSE , and various Departments that support people’s health and well-being, and enable participation in community life. DFI is very disappointed that the only reference given to ‘community services’ is with regard to congregated settings and day services. While these are priority areas, so too are vital and complementary mainstream services accessed by disabled people through their local health office, such as speech and language therapy, occupational therapy, and physiotherapy, as well as community based services that support people’s seamless pathways through the health and social services. These services have been severely restricted over the last six years both as a result of cutbacks as well as the reduction of the health workforce and the moratorium on employment.

Equally, there is no mention of supports such as Personal Assistance, vital to independent living for many people with disabilities. DFI is also very frustrated at the absence of any reference to mainstream health supports in the NDSIP. This demonstrates the lack of understanding within Government practice with regard to supporting people with disabilities to live independently and with ensuring that health services are designed and delivered in ways that include people with disabilities.

DFI has also expressed its concerns with the plans to roll out free GP care for children aged under six, as it does not put those most in need first. Children and adults with disabilities should be given priority to free GP care, which should be based on medical need as opposed to age. A person living with a disability has medical costs that are recurring and ongoing, which could lead to poverty, deprivation and ill health if they are unable to access the services they need. This policy will exacerbate the inequalities that already exist in our health system.

It is true to say that the medical card probity initiated by Government brought unnecessary and serious distress to countless people with disabilities and their families. A key indicator of the Government’s commitment to the health needs of people with disabilities is the reform of the medical card system which would take account of the significant and varied health needs of people with disabilities, and the impact caring for these health needs has upon their income and poverty levels. DFI cautiously welcomed the announcement on the reform of the discretionary medical card system. We welcome the recognition that a ‘humanitarian’ approach is needed, taking into consideration the impact of disability and  the “burden of illness” on the lives of individuals and families. However, the true test will be the ability of the new measures to ensure flexibility to cater for the variety in need, including in relation to disabling conditions that are episodic.

Social Protection

The work of the Department of Social Protection is spread across a number of objectives and actions in the Plan. Objective 2(a) of the NDSIP aims to ensure that ‘People with disabilities have an adequate income’. The first major observation of the Plan in this regard is the lack of reference or action on ‘cost of disability’. Secondly, despite this commitment, people with disabilities have found their income fall more rapidly than the rest of society, and have seen their secondary benefits eroded over the lifetime of this Plan.

The adverse impact of cuts and withdrawals imposed on people with disabilities since 2008 means individuals with disabilities and their families do not have an adequate income and struggle to secure basic necessities. The living standards of people with a disability are also affected by costs associated with their disability, and these costs have been calculated at about one third of an average weekly income [Source] .  The constant chipping away at secondary benefits that offset these costs, plus the introduction of new charges and taxes such as the USC and now water charges, are reflected in the overall reduction in disposable income. The mean equivalised disposable income for people not at work due to illness or disability was €14,841 compared to €26,413 for those at work [Source] . In addition, the ‘at risk of poverty’ rate for people ‘at work’ was 5% compared to 18% for people ‘not at work due to illness or disability’ [Source] .

The reality of living in Ireland with a disability at this time is further masked by data gathering of poverty statistics which do not take into account these extra costs associated with living with a disabling condition or chronic illness [Source] . This means that it is impossible to accurately estimate ‘at risk of poverty’ rates for people with disabilities. Many people are being squeezed beyond endurance and are concentrating all their energies on day to day survival, taking them further and further away from health and well-being.

Employment

Objective 3(a) of the NDSIP is that ‘People with disabilities have access to jobs’. The deliberate government policy to activate those on the Live Register to the exclusion of people on Disability Allowance has led to a number of discriminatory practices that contravene a person’s right to a job as outlined in the UNCRPD.

The delay in the publication of the ‘Comprehensive Employment Strategy’ and the total refusal by the Department of Jobs, Enterprise, and Innovation, and the Department of Social Protection to take the lead on its implementation has been unacceptable. People with disabilities were disadvantaged with regard to employment coming into the recession and DFI is not convinced that the ‘Comprehensive Employment Strategy’, when agreed by Government will be enough to deliver real jobs for people with disabilities that pay and are sustainable in the long term. Firstly, despite the fact that there will be an action in the Action Plan for Jobs, the systemic challenges posed by the social welfare system create a benefit trap that makes it unlikely that work will pay. This is particularly true when it comes to eligibility for the medical card, something DFI continues to monitor closely. The successful implementation of the ‘Comprehensive Employment Strategy’ will depend to a great extent on its integration with mainstream employment strategies and measures, how it will be implemented and monitored, and how it will deliver real outcomes for people with disabilities.

The systematic exclusion of people with disabilities within mainstream activation and employment services is unacceptable. It is an example of how this Government has made certain decisions that directly contravene the commitments laid out in the NDSIP. Intreo services are not designed to deal with people in receipt of Disability Allowance (DA), and so those people on DA who are seeking work are finding themselves disadvantaged in terms of the way Intreo processes, prioritises and deals with them. Capacity amongst staff (including working with people with mental health issues) is a recurring problem. In addition, the systematic exclusion of people on disability payments from mainstream activation schemes such as JobBridge (for people on Blind Pension) and Momentum directly contravenes the objective outlined in the NDSIP to support people with disabilities to access jobs.
Finally, the Youth Guarantee is a new approach to tackling youth unemployment which ensures that all young people aged 18-24 years who become unemployed and register with the benefits/employment service, and who subsequently remain unemployed for four months, will be provided with assistance to secure work or alternatively with a quality offer of training, education or work experience [Source] .

In Census 2011, there were 31,134 young people with disabilities aged between 18-24 years [Source] . Two thirds of young people with disabilities (aged 18 to 34 years) have the desire and ability to work provided the necessary flexibility and supports are put in place to enable them to participate [Source] .

For now, it would appear that the programmes being rolled out under the Youth Guarantee are targeted at those on the live register. The intention of the European Commission was that all young people, regardless of whether they had a disability or not, would benefit from this initiative. The link to the live register is in fact a decision that was made by the Irish Government when designing the programme and is an example of how structural discrimination seeps into policy implementation. To Ireland’s shame, we are the only country to systematically exclude young disabled people from the Youth Guarantee. It is disappointing that the ‘Comprehensive Employment Strategy’ fails to deal with this policy of exclusion. It also demonstrates the lack of ‘joined up’ thinking between mainstream policy, the ‘Comprehensive Employment Strategy’ and our National Disability Strategy. 

Education

Disability is one of the least visible but most potent factors in educational marginalisation. Beyond the immediate health-related effects, physical and mental impairment carries a stigma that is often a basis for exclusion from society and education [Source] . Access to education at all levels is of critical importance in ensuring the full participation of people with disabilities in Irish society and in exercising their full citizenship. It is also a right recognised in Article 24 of the UNCRPD, and also in the National Disability Strategy.

With specific regard to the issues of education and training contained within the NDSIP, the majority of actions do not have a defined timeframe, which again makes it difficult to measure their progress.

The establishment of Solas and the Education and Training Boards (ETBs) is to be welcomed. In this regard, DFI notes the positive development of the DES appointing both DFI and AHEAD as nominating bodies for the ETBs. However more must be done to ensure that people with disabilities are central to their work with clear targets set to allow for monitoring in this regard. The National Plan for Equity of Access to Higher Education (2008 – 2013) has been reviewed (reviews suggest that student numbers in disability sectors are increasing). [Source] It is expected that the new National Plan for Equity of Access to Higher Education will be published shortly after a consultation process which was completed early in 2015. 

There is an urgent need to publish an EPSEN Act 2004 Implementation Plan to coordinate and put priority on the provision of important support services to students with disabilities. While the Government has gone some way to increasing the numbers of Special Needs Assistants through Budget 2015, the previous erosion of this service and the lack of funding for the National Educational Psychological Services (NEPS) has resulted in poorer outcomes for children and young people with disabilities. In addition, there is a lack of data on the numbers of children exiting the formal school system (school leavers) which results in lack of planning for their transitioning needs. The EPSEN Act 2004 provides a legislative framework for these issues to be addressed, however, to date only certain sections of the Act have been commenced, and key provisions of the Act such as individual education plans and the appeals process remain outstanding. 

Children

A series of regressive budgets have slowed the pace at which children’s rights are progressing despite the commitments outlined in the NDSIP.  The reconfiguration of children’s services is being addressed under the Progressing Disability Services for Children and Young People Aged 0 - 18. However, this programme sits outside the remit of Tusla, the Child and Family Agency, and this is contrary to the government’s policy of mainstreaming. While the Progressing Disability Services programme has a long term trajectory, it remains difficult to estimate when such services will be sufficiently redesigned so that every child has equal access to disability services. Budget 2015 only allocated €6m towards reducing waiting lists for services, while estimates from last year of the number of children on an initial assessment waiting list at 15,000. This does not support an early intervention approach.  

Communications

The Department of Communications, Energy and Natural Resources (DCENR) was named lead for four actions outlined in the NDSIP. However, as of June 2015, no consultative committee has been established by this department under the current NDSIP. The DCENR plays an integral role in ensuring equal access to telecommunications that are such an important part of modern life. 

Disability representatives continue to meet with ComReg at the ComReg Forum for People with Disabilities, but DFI have concerns that this forum is ineffective in engaging with telecommunications providers to ensure services are accessible to people with disabilities. ComReg has placed requirements on communications services providers to guarantee equal access and choice to electronic communications services for end-users with disabilities. This is intended to meet Article 23a of the Universal Service Directive, which has been integrated into Irish law as Regulation 17, ‘Ensuring equivalence in access and choice for disabled end-users’.  However, it is the view of DFI that ComReg has adopted too narrow a position in its interpretation and implementation of the Directive and this regulation.

The Broadcasting Authority of Ireland (BAI) is responsible for setting the access rules for sign language and audio-visual descriptions. We are very disappointed at the low level of access that they are obliging broadcasters to subscribe to. With regard to television access, a group of disability and older peoples’ organisations wrote to the Minister (September 2014) to express concern that the Sound and Vision Scheme which issues grants to production companies not only failed to consult with disability organisations on the parameters of the scheme, but also that they did not include robust measures to ensure that they fund accessible programming.

The Broadcasting Authority of Ireland (BAI) and the National Disability Authority (NDA) established a Steering Committee to address the issue of the portrayal and representation of people with disabilities in Irish broadcasting. While working groups have been set up to address this issue, progress have been very slow, and their work was not sufficiently progressed to feed into the principles of BAI’s Code of Programme Standards. In addition, DFI have expressed their concerns that the voluntary guidelines that have been developed for broadcasters on the portrayal and representation of people with disabilities became a ‘Statement of Intent’, which was considerably weaker than the original intention of the Steering Committee.

CONCLUSION

This review of the NDSIP’s progress has been set against the backdrop of austerity, and as such, implementation has had to evolve to survive the wave of withdrawals and cutbacks. The question that this review has attempted to answer is whether to date the plan has been successful. With many of the targets still ongoing in the final months of the plan, and with new issues arising, implementation is not progressing at a credible pace. The NDSIP has not been a ‘live’ policy instrument, and has not responded to the changing context over the period. For people with disabilities, such setbacks infringe their autonomy and ability to live independently. 

Actions that are missing from the NDSIP put forward by the wider DSG included work on the costs of disability, full implementation of the EPSEN Act 2004, roll out of ‘assessment of need’ under the Disability Act 2005 to older children and adults, the strengthening of advocacy services for people with disabilities, including giving the National Advocacy Service powers similar to those set out in the Citizens Information Act 2007 and the narrow focus of the Housing Strategy for People with Disabilities.

There continues to be a large disconnect between ‘what is said’, reflected through the NDSIG high level goals and objectives, compared to ‘what is actually done’. It is clear that the decisions made by Government have been at odds with the commitments made through the NDSIG and wider policy commitments. For example, the deliberate government policy to activate those on the Live Register to the exclusion of people on Disability Allowance has led to a number of discriminatory practices that contravene a person’s right to a job as outlined in the UNCRPD. Budgetary decisions have had a significant impact in pushing people with disabilities further into poverty and disadvantage.

Cuts to disability services as discussed above have been so severe that they are now impacting upon the implementation plan itself. The manner in which some supports and services have been taken away and reinstated reflects the serious adverse effects of uncoordinated thinking across government departments. It was never envisioned that people with disabilities would be worse off now than they were before the plan. To rectify this ‘regression effect’ will require strong leadership and a dedicated commitment to the proper implementation of the Plan, and to its adaptation to ensure it is ‘fit for purpose’.

We have listed in this paper the vital strands of the National Disability Strategy that have not been progressed and which are divorced from the current NDSIP. These actions must become the cornerstone of NDS policy implementation to help realise the ambition contained within the UNCRPD. DFI are disappointed that the Plan, and its commitments, have failed to recognise these ‘big win’ issues and monitor them appropriately. For instance, addressing the ‘cost of disability’, estimated to be up to a third of an average income , could have been identified as an action, across the objectives of income, employment and health. These are important policy concerns, that if resolved could result in substantial gains for people with disabilities in the community. We now have serious concerns for its implementation in that cross departmental working is not being achieved. 

Neither in intent or action does our Government understand that disability is a societal issue. All of the examples in this paper demonstrate how divorced the NDS is from the heart of decision making at Government level, making it a separate entity rather than an overarching strategy. It is both unsustainable as a response and unacceptable to people with disabilities. It is DFI’s view that the ‘regression effect’ is outweighing any achievements of this plan. People with disabilities continue to lose ground in post-recession Ireland.

If this plan is to prepare the nation for the ratification of the UN CRPD, cuts to services and supports need to be brought back to pre-recession levels, and key areas that support independence, choice, and participation need to be addressed/reformed including cost of disability, labour market activation, and transport.

The Disability Federation of Ireland (DFI) represents the interests and the expectations of people with disabilities to be fully included in Irish society. It comprises organisations that represent and support people with disabilities and disabling conditions.

The vision of DFI is that Irish society is fully inclusive of people with disabilities and disabling conditions so that they can exercise their full civil, economic, social, and human rights and are enabled to reach their full potential in life. DFI’s mission is to act as an advocate for the full and equal inclusion of people with disabilities and disabling conditions in all aspects of their lives.

There are over 120 organisations as affiliates or associates, of DFI. DFI also works with a growing number of organisations and groups around the country that have a significant disability interest, mainly from the statutory and voluntary sectors. DFI provides information, training and support, networking, advocacy and representation, research and policy development / implementation, and organisation and management development.

DFI works on the basis that disability is a societal issue and so works with Government, and across the social and economic strands and interests of society.

References

1. The NDSIP covers a three year period 2013 – 2015, yet it was not published until July 2013.

2. Department of Justice and Equality (2013: 2) ‘National Disability Strategy Implementation Plan 2013 – 2015’, Department of Justice and Equality

3. Department of Justice and Equality (2013:2)

4. This level of deprivation is compared to a national average of 30%. (CSO, SILC, 2013 Results).

5. After its Gross Domestic Product increased by 0.4% in the three months up to June 2013.

6. The Universal Declaration of Human Rights 1948 was not found to be sufficient to enable people with disabilities to have their rights vindicated prompting a new convention to be adopted in 2006 and specifically related to disability.  Ireland, has yet to ratify the CRPD but was amongst the first signatories of the convention on the 30th March 2007.

7. Not providing for the cost of disability, and the impact of new charges on people with disabilities, e.g. Universal Social Charge.

8. Miriam O'Callaghan: “… many people asked me about issues of social justice and equality, ok things like issues of disability, gay marriage, children’s referendum, issues that over the years governments in this country have dodged and not done enough about, I want to ask all of you, if you had one key social justice or equality issue that you would pursue if you were in government, what would it be?

Eamon Gilmore: I think it would be looking after people with disabilities, I think that for example what Fianna Fail did in cutting the Blind Pension, I think that was scandalous. The first area that Labour in government would address in terms of equality and in terms of giving decent supports to people would be the area of disability, I think as a country I think we have to make that a priority.

Enda Kenny: That’s very laudable, I share that, I also feel an absolute priority should be the 300,000 people who suffer from mental illness every year, the 75,000 who attempt self harm and the racketing up of a priority for those who unfortunately have the tragedy of suicide visit their families.

9. Drop in HSE funding for disability services based on €1,694.1 million net expenditure on these services in 2008 (Value for Money report, 2012) and the projected €1,535 million spend for 2013 (National Service Plan 2013). Cuts to Disability Services for each year were: 1% in 2008; 2% in 2009; 5% in 2010; 1.8% in 2011; 3.7% in 2012; 1.2% in 2013.

10. Health Research Board (2014) ‘Table 3.2 Future requirement for therapeutic intervention and rehabilitation services by age group, (7,671 records)’, HRB Statistical Series 23: Annual Report of the National Physical and Sensory Disability Database Committee 2013

11. HRB (2014)

12. HRB (2014)

13. HRB (2014) Table 3.4 Future Requirement for Personal Assistance and Support Services. These figures are an under-estimation of the true need of services due to the voluntary nature of the database, and because need and future need is self-reported.

14. The funding distributed dropped from €39,827,000 in 2010 to €17,328,000 in 2014, a decrease of 56.49%. Social and Affordable Housing Statistics, http://www.environ.ie/en/

15. http://www.socialjustice.ie/

16. According to the Living Wage Technical Group, http://www.livingwage.ie/, the Living wage is €11.50 per hour. An approximate figure of €23,000 is based on a 39-hour working week for a single person with no dependents.

17. Research carried out by Bray Area Partnership showed that 42 disabled people were living in the participating 9 nursing homes in that area, aged between 27 and 65. Bray Area Partnership (2013) Old too Soon- Younger People with Disabilities Living in Nursing Homes in the Bray and Greystones areas of Co. Wicklow.

18. “In 2011 the HSE centralised the administration of the scheme and in 2012 commenced a review of all card holders. By the end of 2013, the HSE had reviewed almost 1 million card holders and the proposal is that the entire medical card population will have been subject to review by the end of 2014. In 2014 and arising from a huge negative reaction by the public, the Government stalled the review of those medical cards that were allocated on a discretionary basis.” Houses of the Oireachtas (2014) Public Accounts Committee (PAC) Report on the Review of Medical Card Eligibility, October 2014.

19. www.irishtimes.ie, 18th July 2014.

20. The outcome of the meeting of the Taoiseach with Joan Burton and Richard Bruton in January 2013 was that neither the Department of Social Protection nor the Department of Jobs, Enterprise and Innovation took responsibility for the development of the CES within the NDSIP.  The resolution from Government was that the Cabinet Social Policy Committee chaired by the Taoiseach would take responsibility and the NDA and Christy Lynch would be tasked with its development.

21. Part 3 of the Disability Act 2005 requires six Government departments to prepare plans
(known as sectoral plans) that set out how they will deliver specific services for people with disabilities.

22. Some are explicitly stated in a very similar manner as to how they were expressed in the NDSIP and others are alluded to or discussed in a different manner.

23. Census 2006 and Census 2011

24. CSO (2013) ‘Table 1 Actual and projected population classified by sex and age group, 2011 - 2046 (M1F1)’ from Population and Labour Force Projections 2016 – 2046, Central Statistics Office

25. In line with current policy directions in the Value for Money and Policy Review implementation.

26. Cullinan, J., Gannon, B. and Lyons, S. (2008) Estimating the Economic Cost of Disability in Ireland. ESRI Working Paper 230.

27. CSO (2015) Survey on Income and Living Standards (SILC) 2013. Table 1 (f) www.cso.ie

28. CSO (2015) Survey on Income and Living Conditions (SILC) 2013, Table 2. www.cso.ie

29. ‘The implication is that if disability reduces the standard of living of households for a given level of income, poverty measures based on income will underestimate the problem.’ Cullinan, J., Gannon, B. and Lyons, S. (2008) Estimating the Economic Cost of Disability in Ireland. ESRI Working Paper 230.

30.Pathways to Work. The implementation of the EU Council Recommendation for a Youth Guarantee. https://www.welfare.ie/en/downloads/Youth-Guarantee-Implementation-Plan.pdf

31. www.cso.ie, interactive tables, Population (Number) by Disability Type, Sex, Single Year of Age and
Census Year.

32. The figure is almost two thirds for younger people with a disability (63 per cent of men and 65 per cent of women in the 18 to 34 age group, CSO, 2010, Table 7.19). Watson, Dorothy and Nolan, Brian (2011:24) ‘A Social Profile of People with Disabilities in Ireland’, ESRI and Department of Social Protection.

34. According to a short article on the HEA website, 2/11/2014: http://www.hea.ie/en/policy/national-access-office/2014-2016-action-plan

 

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