Padraic Fleming looks at the area of Individualised funding for people with disabilities in Ireland and uncovers positive efforts to effect better support for people with disabilities including intellectual disability.
Money for people with disabilities has normally been managed by services. Individualised funding means that a person with a disability is in charge of their own money.
There are different types of individualised funding. Sometimes a person can get help with their money and how to spend it.
Individualised funding is not a new idea. We can learn from other countries.
A team in Maynooth University has been doing some research in this area. They found that people felt better about their lives.
Traditionally, public funds allocated for people with a disability have been distributed among service providers to deliver a suite of services to meet all personal, health and social care needs. However, recent years have seen a greater emphasis on, and attendant policy shift toward, what has been called individualised funding. Individualised funding is an umbrella term for various funding mechanisms that aim to provide personalised and individualised support services for people with a disability. It aims to give people with a disability more control over their lives, the things they do and the people with whom they spend their time. It does this mainly by giving the ‘spending power’ to individuals, their families or advocates. Being in control of the money has the potential to open up considerable possibilities. Supports and activities can be purchased from the more traditional centre-based services as well as, or combined with, alternatives that are already available from within the community.
The two most popular forms of individualised funding are ‘Direct Payments’, where the individual or legal guardian receives the funds directly and self-manages the administration and purchases. A second option is where individuals receive the support of an intermediary service. The level of service provided depends on individual needs and ranges from purely administrative support to personal and social care support. In both models, individuals receive high levels of support in the transition from traditional congregated service provision or if applicable during the transition from school into adult day services.
Four initiatives in Ireland have been funded by the Genio Trust to pilot individualised funding. Genio brings funders together to develop better ways to support disadvantaged people to live full lives in their communities (www.genio.ie). A multi-phase evaluation focusing on the implementation of these initiatives is currently being undertaken by staff in the Mental Health and Social Research Unit located in Maynooth University Department of Psychology. Initial findings from this evaluation were presented by the author at a recent international conference hosted by The Centre for Inclusion and Citizenship in the University of British Columbia, Vancouver, in a presentation called ‘Claiming Full Citizenship – Self Determination – Personalization – Individualized funding’ (Fleming, McGilloway, & Barry, 2015).
In Ireland, there is currently no standardised ‘Resource Allocation System’ in place for assessing how much money an individual needs to meet their personal, health and social care needs. Since 2010, the National Disability Authority has conducted extensive research on possible systems and undertaken a two-phase feasibility study to pilot four resource allocation systems in order to determine which is the most suitable within the Irish context (National Disability Authority, 2015). The lack of such systems and the associated difficulties in accessing funds tied up in the current funding system, has been seen as one of the most significant challenges for organisations implementing individualised funding in Ireland.
“The biggest single problem, and the biggest single delay has been trying to get the funding, and that comes in under a couple of headings. One is decoupling funding from a block grant…” (Staff member interviewed as part of evaluative research (Fleming et al., 2015)
“If they didn’t make it such a monumental struggle to get (the funding). Like that would break the heart of anybody” (Parent during participatory workshop as part of evaluative research (Fleming et al., 2015)
While additional challenges were encountered during the implementation of the pilot projects, many of these can be, and have been, managed internally. These challenges often relate to the transition from the traditional mode of service delivery and the consequent need to equip individuals with the life skills, decision-making skills and the natural support network required for these projects to be successful. Changes to organisational structures or equipping staff, individuals or advocates with hands-on experience of the individualised funding process have led to the natural emergence of individually tailored solutions. Furthermore, by looking outside of Ireland and learning from the experiences of other countries and their journey over the past two decades, practitioners and participants can strengthen the efforts in Ireland, accelerate the learning and avoid potential pitfalls into the future.
Individualised funding has been used with varying degrees of success since the 1970s, and up until recently, in countries as diverse as Canada, the US, the UK, Australia and New Zealand. Each jurisdiction obviously has its own structures and systems, benefits and challenges. There were two striking messages from the Vancouver-based international conference in October, for those in Ireland who are striving to build upon the policy commitments to provide personalised supports through individualised funding (Department of Health, 2012). Firstly, the challenges being experienced in Ireland have been experienced elsewhere and continue to be experienced, even with strong systems and processes in place. Secondly, while resource allocation systems are fundamental for individualised funding to operate in these countries, an over-emphasis on building strong systems can lead to a loss of the values associated with individualised funding.
Unexpectedly, the uptake of individualised funding has been relatively low in Canada. A recent study indicated a number of potential reasons for this, including how information was delivered; peer influences; lack of promotion; lack of understanding about the new system; lack of staff training and associated trickle-down effect of information; fear of isolation; frustration over amount of paperwork involved; families’ risk-aversion and long term fears; fear of losing security associated with traditional services; and the sense that the wider community is unwelcoming (Bahadshah et al., 2015). All of these elements are also reflected, to some degree, in the Irish research being conducted by Fleming et al (2015). In Ireland however, we have the advantage of learning from these experiences before individualised funding is widely adopted, thereby ensuring that the necessary resources are in place to alleviate a lack of training, information and stakeholder fears and concerns.
In New Zealand, where there was a marked increase in those using individualised funding during 2009-2014, research has indicated that individualised funding can lead to cost reductions in the delivery of disability services (Field, 2015). Furthermore, the use of story-telling and, in particular, the use of online videos (see http://tinyurl.com/stories-building-capacity) was advocated by an organisation called Manawanui as a means to address the challenge of informing families, to illustrate the impact of individualised funding on individuals’ lives and to increase the effectiveness of professionals working with families (Janson, 2015). Organisations within Ireland have also harnessed online media to tell similar positive stories; for example, PossibilitiesPlus commissioned a short video whereby individuals availing of individualised funding spoke about their experiences. This video was produced by Fionnathan Productions – a video-making business set up by a recipient of individualised funding through the ÁT network in Ireland (PossibilitiesPlus, 2014). Genio has also produced a series of videos depicting personal stories from within the many disability and mental health projects that they have previously funded, including individualised funding through the ÁT network (Genio, 2011).
These videos bring to life many of the positive themes which emerged from the evaluative research in Ireland. For example, Fleming et al (2015) found that the successes of individualised funding generally outweighed the challenges. For individuals with a disability, the positive elements included improved self-image with people describing more self-confidence, skills, a sense of leadership and success; the development of independent life skills; new experiences including the opportunity to travel independently (having received the relevant mentorship), and the possibility to purchase items to assist individuals to function independently. There were also health improvements reported by some individuals, and a greater sense of control and life purpose, all of which were facilitated by increased social support from family, friends and the wider community.
The benefits of the individualised model also extended to natural supports (such as family and friends) and organisational staff, processes and systems. For example, those providing informal support grew in confidence, whilst their fears about their friend or family member leaving the perceived security of traditional settings were alleviated; at the same time, their perceptions around the abilities of their family member with a disability were enhanced, as were their perceptions of their wider network of friends, colleagues and the general community. In terms of process, tools were developed to support individuals in identifying and organising activities within the community, the role of the intermediary support person was developed and a circle of support established in a participatory way with individuals, families, friends and other advocates.
Advances were made in de-bundling money from the block grant, although these were on an individual basis – dependent on individual disability managers – an uncertainty which further highlights the need for a national standardised system of resource allocation. For organisations, there were developments in building an enabling work culture; the trust between service provider, the HSE and families was enhanced, and real and perceived value for money was experienced. These and other findings from the evaluation of individualised funding by Fleming et al. will be published in due course, with a view to informing practitioners, decision-makers in HSE, the Department of Health and the Department of Finance. Most importantly though, for individuals with a disability, their families, friends and advocates, the purpose is to help them understand the potential challenges that lie ahead with the individualised funding option, but also the potential life-enhancing aspects which can be expected.
Our evaluation of individualised funding in Ireland is due for completion in 2017, but our preliminary findings support the policy commitments and advocate-led call-to-action to introduce a resource allocation system to enable and strengthen individualised funding and support. Furthermore, it is important that service providers in Ireland are encouraged to learn from projects both in Ireland and abroad in order to fast-track organisational, family and individual learning. By so doing, there is a real possibility that a robust, accessible and sustainable system of individualised funding can be rolled out in Ireland over the coming years.
Bahadshah, Z., Johnson, C., Humphrey, J., Laidlaw, J., Vilvang, M., & Zebrof, S. (2015, 15 – 17 October). Improving Individualized Funding for End Users: An Example from British Columbia, Canada Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.
Department of Health. (2012). Value for Money and Policy Review of Disability Services in Ireland. Dublin, Ireland: Department of Health Retrieved from http://health.gov.ie/blog/publications/value-for-money-and-policy-review-of-disability-services-in-ireland/.
Field, A. (2015, 15 – 17 October). Individualized Funding in New Zealand: A Study of FinancialImpact and Potential Cost Savings Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.
Fleming, P., McGilloway, S., & Barry, S. (2015, 15 – 17 October). Individualized Funding: The Experiences, Barriers and Facilitators Associated with Implementing Four Pilot Initiatives in Ireland. Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.
Genio. (2011). Individualised Funding. Disability and Mental Health Retrieved from http://www.genio.ie/multimedia/videos/disability-and-mental-health
Janson, A. (2015, 15 – 17 October). Building an Interactive Coaching Tool to Facilitate the Transition to Individualized Funding. Paper presented at the Claiming Full Citizenship: Self Determination, Personalization, Individualized funding. 2015 International Conference, The Hyatt Regency, Vancouver, Canada.
National Disability Authority. (2015). NDA Resource Allocation Research. Retrieved from http://nda.ie/Publications/Disability-Supports/Resource-Allocation-Project/
PossibilitiesPlus. (2014). Living self directed lives – doing it our way. Retrieved from https://www.youtube.com/watch?v=vpeY6gMSZLo