The future will see a paradigm shift to individualised assessment of need and support with ring-fenced individualised funding, thereby transferring the balance of power from the service provider to the person with intellectual disability and their families, writes Breda Crehan-Roche.
In today’s economic environment there are many challenges and problems facing services providers, however, there are also opportunities. Over the years services and supports for persons with intellectual disabilities have seen many changes, in particular during the last 25 years. One of the main changes has been the move from the traditional medical model to a more holistic, social model of service provision. Services throughout Ireland are now based on a set of values as outlined in O’Brien’s Principles of Inclusion, Choice, Dignity, Respect, Participation and Contribution (1997), with advocacy and person centred approaches.
The aim of services and supports is to empower each person with intellectual disability to live full, active and valued lives in their local communities. Currently, health and personal social services for persons with disability are provided by many statutory, non-statutory and voluntary sectors. In the intellectual disability sector, it is estimated that over 85 per cent of services and supports are provided by the non-statutory sector. Funding, in the main, is through the Health Service Executive with contractual Service Level Agreements.
The current health and personal social services system tends to focus on services and supports rather than on individualised outcomes and can often prioritise the provider’s expertise over the experiences of the individual
The intellectual disability sector is governed by legislation which inter alia includes: The Disability Act, EPSEN (Education for Persons with Special Educational Needs) Act and the Equality Acts. Other relevant instruments are the HIQA Standards for Residential Care (yet to be implemented), U.N. Convention on the Rights of Persons with Disability (signed but not yet ratified by Ireland) and the National Disability Strategy. The strong commitments outlined in the Sectoral Plans published under the Disability Act and the establishment of the Office for Disability and Mental Health, are all welcome developments. Going forward there will be significant challenges for service providers, with the expected completion in 2011 of the Value for Money and Policy Review of the Disability Services. All of the foregoing, coupled with the current economic climate, new Government plans, public sector reform, cuts to funding, the need to do more with less, and increasing demand for services, will require service providers to achieve efficiencies through increased collaboration and sharing of resources.
We live in an ever changing and complex environment. All the indications at present are that a new national policy is likely to advocate for a transformational shift from the current service provision status quo. Research evidence indicates that services and supports that encourage self-direction and determination and provide opportunities for inclusion and participation, achieve good outcomes in a cost effective manner. The future will see a paradigm shift to individualised assessment of need and support with ring-fenced individualised funding, thereby transferring the balance of power from the service provider to the person with intellectual disability and their families.
Priority needs to be given to developing a structure for decision making and the implications of this need to be considered vis-à-vis the pending Mental Capacity Bill
The current health and personal social services system tends to focus on services and supports rather than on individualised outcomes and can often prioritise the provider’s expertise over the experiences of the individual. We need to ensure that individuals and their families are supported to be active partners with service providers in decisions about their lives. Issues such as self-managed/directed funding, governance, accountability, and monitoring of quality and standards will need to be explored and carefully addressed. Priority needs to be given to developing a structure for decision making and the implications of this need to be considered vis-à-vis the pending Mental Capacity Bill.
Individualised payments and direct funding will seriously challenge service providers in the context of existing and future employment contracts. In order for individualised funding to become a reality, the person must know what services they want and need, and have a clear desire to take responsibility for improving their services. This may not be for everyone, as issues such as interviewing, training, hiring/firing staff, management of financial affairs and all the duties that being an employer entails, may be too onerous for some. All of these issues need to be considered and addressed and where there is a desire to self-manage and self-direct services and supports the person must be supported to do so. For individuals who do not desire such an option they must be empowered to be active partners with service providers. Findings from the Report on Public Consultation (Dec 2010) indicate that there were two key themes which emerged from consultation; quality of life issues – determined by exercise of choice and control – achieving and maintaining independence and community participation, and the organisation and delivery of the Disability Services Programme – importance of consultation, individualised funding, control over money, flexible and person centred services, access to healthcare, transport, housing, education and employment.
The future will challenge, but also provide opportunities for service providers to be more creative, to be truly person centred and to empower people to have more control and choice in their daily lives. The service providers who persist in providing the standard approach to service provision will fast become outmoded and will have forgotten the sage advice that the world belongs to those that are flexible.
Breda Crehan-Roche, Chief Executive, Ability West. Blackrock House, Salthill, Galway.
- O’Brien, J. & O’Brien C (Eds) (1997) A little Book of Person-Centred Planning. Inclusion Press
- Report of Public Consultation Efficiency & Effectiveness of Disability Services in Ireland (December 2010) Department of Health & Children