April NUI Galway Report Highlights the Need for Independent Living for Persons with Disabilities

Report calls for policy change to enable persons with disabilities the opportunity to direct their own services and live independently

A report published by the Centre for Disability Law and Policy at NUI Galway, calling for policy change to enable persons with disabilities the opportunity to have greater choice and control over their service provision, was recently launched by Senator John Dolan at the Disability Federation of Ireland.

The report, presented by Dr Eilionóir Flynn, Director of the Centre for Disability Law and Policy at NUI Galway, is entitled ‘Independent Living: An Evaluation of the Áiseanna Tacaíochta model of Direct Payments’. The research, carried out by Professor Gerard Quinn and Dr Sinéad Keogh from NUI Galway, examines if direct payments, where individuals with disabilities purchase services and direct their own care, creates a better quality of life than that of the traditional model of service provision, at no extra cost.

Professor Gerard Quinn from NUI Galway, comments: “The past number of years have seen a global shift from a welfare system, which has treated persons with disabilities as dependent, passive recipients of ‘care’, towards a growing recognition of the need for a new approach that enables persons with disabilities to assume an active role in the society in which they live. This has been mirrored in Ireland by the growing demand by the Irish disability community for control and choice over how they wish to live their lives and the services they use.”

The report reaffirms the findings of international literature that point to considerable benefits for users of direct payments, arising from greater flexibility, choice, independence, continuity of support and the customising of support packages. It also highlights the need for a policy change in Ireland in relation to how services are delivered for persons with disabilities’ and emphasises the need for a change to the current model of service provision in Ireland.

Key findings from the report:

• The Direct Payments model of service provision, facilitated by Áiseanna Tacaíochta, places persons with disabilities at the centre of the decision-making process, recognises their strengths and preferences and gives them the confidence, support and means to shape the way in which their care is provided by transferring choice and control over funding decisions to them and allowing them to identify their unique individual needs.
• Not only does the Direct Payments model of individualised funding offer more clarity and transparency as to how public funds are spent but the Direct Payments model demonstrates cost savings and cost efficiencies. The report estimates that eighteen people achieved cost savings of approximately €136,000 in one year by directing their own services, such as hiring their own personal assistants and taking on the administrative burden that comes with running their own companies.

The report makes four key recommendations:

• The need for the Direct Payments model and other models of individualised funding to receive further funding and support from the Government.
• The importance of the requirement of a single assessment tool to evaluate individuals’ resource allocations based on individual goals, the impact of disability, family circumstances and living arrangements.
• The transformation of the disability service provision model to permit persons with disabilities to more easily move their service provision from one Community Healthcare Organisation to another.
• Individualised funding budgets being extended to the purchase of equipment, aids, and other goods and services that relate to the healthcare needs of the individual following an assessment.

Commenting on the results from the report, María Soleded Cisternas Reyes, United Nations Special Envoy on Disability and Accessibility, said: “This report shows that without a doubt, direct payments, as a model of service provision, works to give independence back to persons with disabilities. Being in control of one’s services enhances well-being and empowers individuals. Direct Payments is a step in the right direct for service provision in Ireland.

Professor Theresia Degener, Chair of the United Nations Committee on the Rights of Persons with Disabilities and Professor of Law and Disability Studies (Protestant University of Applied Sciences, RWL, Germany), said: “This report comes timely just before Ireland will ratify the Convention on the Rights of Persons with Disabilities. In our General Comment No 5 the CRPD Committee has emphasized that direct payment is key to realizing the human right to independent living. This excellent evaluation of ÁT Model of direct payment will help the Irish government to fulfill its duties under Article 19 CRPD.”

Mairead McGuinness MEP, First Vice-President of the European Parliament, said: “The positive evaluation of the direct payments model should come as no surprise, as giving people control over their lives is central to giving people the chance of a better quality of life. This report is hard evidence that giving disabled people a say in their level of care and support enhances and empowers, the current model of supplying what services we think disabled people should have is less effective in meeting their needs and enhancing their wellbeing. As a model of care, it deserves support and wider implementation.”

To read the full report, visit: https://www.nuigalway.ie/centre-disability-law-policy/research/publications/

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