THALIDOMIDE PAYMENT 1 Introduction and Description

The purpose of the sub-programme is to provide income support for the 31 Irish survivors of thalidomide.

13.5.2 Rationale, Objective and Continuing Relevance

The rationale for the introduction of the State payment in 1975 was to match the payment of a German Foundation (where the drug was manufactured). The current monthly payments made by the State are on a par with the payments made by the German Foundation to thalidomide survivors, including Irish survivors.

The sub-programme is consistent with government policy as stated in the Programme for Government -“We will reopen discussions with the Irish Thalidomide Association regarding further compensation for victims of Thalidomide”.

The linkages between the Thalidomide Payment sub-programme and other government programmes are: (i) Irish thalidomide survivors were provided with an entitlement to a medical card; (ii) the thalidomide payment is exempt from tax and DIRT; and (iii) the thalidomide payment is excluded from the calculation of earnings in respect of means testing for State allowances.

13.5.3 Programme Effectiveness

The objectives of the sub-programme have been achieved in so far as each Irish survivor of thalidomide has received a monthly payment since 1975 which has increased in line with CPI/Social Welfare rates.

13.5.4 Programme Efficiency

The Estimates for 2011 includes provision (€370,000) for the on-going costs associated with the Government’s offer in 2010 of additional financial supports for Irish survivors of thalidomide.

Table 13.6: Trend in Expenditure (Estimated) - Thalidomide Payments 2008-2011 2008 (€) 2009 (€) 2010 (€) 2011(€)-budget allocated Non-Pay 374,000 374,000 374,000 745,000

WTE trends are not applicable to this sub-programme. Administration costs associated with this sub programme is negligible as payments are made by the Department of Health through their payroll system. The output from the programme is the provision of income support to the 31 Irish survivors of thalidomide. Payments have remained static in recent years with the decreases associated with Social Welfare rates of payment not having been applied to the thalidomide payments.

13.5.5 Conclusions

This sub-programme should be continued. Since 1975 all Governments have maintained this payment for Irish survivors of thalidomide and the Programme for Government commits the State to maintaining the payment into the future.

13.6 CONCLUSIONS, SAVINGS AND REFORM

While current policy objectives emphasise ‘full and independent lives’ the available information shows that many disability services are not organised or provided in a way that supports this goal. The current model of provision has been examined by an Expert Reference Group, in the context of the ongoing Value for Money & Policy Review of Disability Services and a recommendation has been made that there be a very significant reframing of disability services towards a model of individualised supports, underpinned by mainstreaming of all public services.

The VFM & Policy Review has not yet reached the stage where findings and recommendations have been approved by the VFM Steering Group. Work is continuing on a number of key areas, including unit costing and the Report is expected to be completed before the end of the year. In the interim, recommendations which the Department support and which are under consideration by the Steering Group are summarised below:

Key Savings

Consideration to be given to:

• Disability Agencies: An assessment of the feasibility of changing the status of agencies currently funded under Section 38 of the Health Act 2004, to allow agencies the flexibility to determine their own pay rates.

• Disability Transport Services: Examination of the feasibility of charging a contribution towards the costs of transporting services users to and from disability services.

• Central Procurement: Determination to be made on the potential savings from central procurement for significant items of expenditure, and if warranted, the implementation of central procurement, to include central negotiation where appropriate, on issues such as contracts for supply of public utilities.

Key Reforms

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• Tendering for New Community Based Model for Disability: Both the Report of the Working Group on Congregated Settings (June 2011) and the soon to be completed Value for Money & Policy Review of Disability Services indicate the need for fundamental changes in the type of services provided with a much greater emphasis on “mainstreaming” (e.g. clients being housed by housing authorities and accessing mainstream community health and social services) and client choice (e.g. personal budgets). They also indicate that there should be some scope for cost efficiencies. The real challenge will be to move from the existing to the preferred model of care. In the normal course, this could take seven to ten years. However, it is considered that an alternative approach to implementation should be explored based on seeking tenders from existing or potential new providers for the proposed new community-based model and for day and respite services for people with disabilities. • Consideration also to be given to:

o Resource Allocation: Establishment of an evidence based resource allocation model to support a standardised assessment of individual need and an equitable allocation of available resources.

o Disability Information Strategy: Development of an overarching information strategy to support the planning, delivery and monitoring of services and incorporating standardised reporting and performance monitoring protocols.

o Skill Mix: Examination of skill mix in the context of the proposed move from a professionally delivered model of services to a community based model underpinned by individualised supports.

o Client Staff Ratios: Determination of best practice in relation to staff client ratios for different models of service and for different support needs, and adoption of national benchmarks against which performance can be monitored.

o Staff Rostering: Development of best practice guidelines by the HSE in respect of staff rostering, with the aim of achieving the most productive match between staffing, service activity levels and client need, while safeguarding service quality and effectiveness.

o Shared Services Arrangements for Voluntary Agencies: Implementation of joint working and shared service arrangements between voluntary agencies wherever possible, including clinical, therapeutic and back office services as appropriate.

o Standardisation of Assessment for Disability Allowances: In addition, centralisation and standardisation of the assessments associated with the application of various Disability Allowances and the ancillary introduction of new technology should lead to improvements in efficiencies.

CHAPTER 14