Innovation funding for disability and mental health

by Madeleine Clarke

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There is universal agreement that people with physical, intellectual and sensory disabilities, as well as those with mental health difficulties, should be supported to live self-determined lives and be included and valued as equal citizens. This agreement is reflected in our legislation and policy, which focuses on the individual and his or her participation in identifying what he or she requires to benefit maximally from inclusion in the community.

Within the international context, the Convention on the rights of persons with disabilities, adopted by the United Nations General Assembly in December 2006, includes the general principle ‘Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons’.

However, it is clear that there is a significant implementation gap; instead of providing services which are individualised and support the person to live a self-determined life, our response has too often been to group people together and to provide ensure that all new funding is channeled to secure a more desirable future for people with disabilities and mental health difficulties through cost-effective, personalised supports. In addition, existing resources currently locked in traditional, less-helpful approaches need to be redeployed.

There are an increasing number of initiatives, here and in other countries, which strive to involve the person (or his/her advocate) centrally in identifying his/her own needs and how these will be met, rather than ‘fitting’ the person into available service options. Crucially this approach moves beyond a narrow perspective of specialised health and social services, to consider the wider range of supports and opportunities that are required for individuals to live in the community, participate in employment and access experiences on an equal basis with others in society.

The current economic downturn in Ireland presents an opportunity to refocus resources in a more strategic, cost-effective direction. It is clear that independent private funding standardised responses to heterogeneous needs which have the effect of separating and devaluing people with disabilities in the eyes of the community.

The traditional focus has been on deficits rather than abilities. We have accorded a disproportionate emphasis to health and specialist interventions. Undoubtedly, many individuals with disabilities or mental health difficulties have needs for specialist services. However, to view their needs exclusively through this particular lens inhibits a more rounded appreciation of the person and can obscure the totality of needs we all share in common. This magnifies stigma and social exclusion. It also inhibits the possibilities that people with disabilities and mental health difficulties have to contribute to society in many ways.

In addition, those in key decision-making positions have inherited a situation in which resources are allocated in a way in which some have little or no access to supports, while others are supported in an expensive and unsustainable manner. Significant resources are trapped and wasted in services that are misaligned with public policy and which are neither cost-effective nor customised in their delivery.

A concerted effort is required to could be used to achieve significant impact and leverage that would have a lasting positive effect on the lives of people with disabilities and mental health difficulties.

Innovation fund applications

GENIO is a non-profit organisation, established in 2008 and rooted in the belief that by valuing diversity both the individual and society can benefit from the unique contribution of all citizens. Genio works with statutory bodies, philanthropic organisations and not-for-profit organisations in order to accelerate the availability of proven, cost-effective, personalised supports and information, enabling people at risk of social exclusion to lead full lives.

In the cross-disability and mental health areas, as part of a strategy developed in consultation with key stakeholders, Genio has developed a fund comprising of contributions from government and philanthropic agencies. Health innovation funding has been contributed to support the ‘transition from institutional to person-centred models of care in disability and mental health services….in line with the objectives of government policy as set out in A Vision for Change and with the objectives of the National Disability Strategy’ (Minister of State John Moloney, 9 December 2009).

On Friday, 9 April 2010, the Office for Disability and Mental Health, Health Service Executive and Genio invited applications through the national press, for funding to enhance individualised supports that enable people with disabilities and mental health difficulties to live meaningful lives as included members of their communities.

This fund, comprising €3,665,000, combines an allocation of health innovation funding announced in this year’s budget (€3m) by Minister John Moloney and an allocation by the Atlantic Philanthropies (€665,000). Applications were invited from groups and organisations that:

  • provide personalised support and are focused on changing the lives of identified individuals with disabilities or mental health difficulties;
  • contribute to overall aims of increasing availability of personalised supports in other focused and strategic ways.

The range of initiatives supported by the fund will span different types and levels of disabilities (i.e. physical and sensory disabilities, intellectual disabilities) and mental health difficulties, different phases of the life cycle (e.g. children, young people and adults), a variety of locations (urban and rural settings) and examples of cross.departmental and cross-agency collaboration. The closing date for applications was 28 May 2010; 379 applications were received from initiatives around the country. Genio is currently working closely with the HSE and the Office for Disability and Mental Health to ensure the funding is used to best effect.

Priority will be given to applications from those who can demonstrate capacity to use resources to best effect for sustainable initiatives.

‘Over the past few decades, the boundaries between the public (government), private (business), and social (non-profit) sectors have been blurring as many pioneering organizations have been blending social and environmental aims with business approaches’ (fourthsector.net).

This fund is being developed as a model which brings public and private interests together to improve the lives of those at risk of social exclusion.

Genio works to:

— Identify and promote good examples of cost-effective, personalised supports for people with disabilities and mental health difficulties

— Provide the evidence required to accelerate the availability of these supports

— Support the development of strategic self-advocacy

— Facilitate and capacity-build cross-sector collaboration between key stakeholders (individuals at risk of social exclusion, statutory agencies, NGOs and private/philanthropic organisations)

— Provide practical support in the form of expertise and funding

— Offer independent research and evaluation

A day in the life

In a public endorsement of this change in focus from traditional to personalised modes of support, the national cross-disability and mental health public event ‘A Day in the Life’ took place in Dublin city centre on Monday 19 April 2010. It was the first time that 16 key organisations from across the disability and mental health sectors in Ireland joined forces to express solidarity for the transition to individualised supports for people with disabilities and mental health difficulties in Ireland. Delegates had the opportunity to learn first-hand from the lived experiences of people with disabilities and mental health difficulties who spoke at the event, and also through video footage screened during the day. This was complemented by presentations from individuals and organisations providing perspectives on the strategic and implementation challenges involved in transitioning from group or institutional settings to individualised supports.

Minister of State John Moloney TD addressed the audience on the day and spoke compellingly of the government’s commitment to driving innovation and progress in support of the transition from traditional institutional settings to supported living within local communities.

The event also featured experience from abroad, with a presentation from Thorkil Sonne, a native of Copenhagen and founder of Specialist People Foundation, who spoke about his work in developing meaningful job opportunities which harness the unique skills of people with autism.

The success of this event highlights the commitment of individuals and organisations throughout the country towards self-directed, individualised supports for people with disabilities and mental health difficulties in Ireland. It is important now to build on this momentum and accelerate the availability of these opportunities.

Madeleine Clarke began her professional career in 1980 as a psychologist with the St. John of Gods services and moved to work with Barnardos in 1984 where she became Deputy Chief Executive and had particular responsibility for developing a national approach to the design and delivery of services for children and families. From 1995 to 1999 Madeleine also worked as co-founder and inaugural chairperson of the Children’s Rights Alliance during which time its membership grew from eleven to seventy organisations including service providers, professional organisations and trade unions, the National Parents’ Councils, youth organisations, disability coalitions, Traveller Groups and others concerned with children’s rights. She was a member of the government appointed Working Group to develop the national child protection guidelines, Children First – National Guidelines on the Welfare and Protection of Children (1999). In 2000, she began working as an independent consultant with statutory, non-governmental and philanthropic organisations on a wide range of commissions relating to children, older people, people with disability and mental health difficulties, and immigrants. In 2008 Madeleine established Genio (formerly the Person Centre) in order to take a more proactive and systematic approach to contributing to working with others to bringing about positive change for people at risk of social exclusion. With the support of the Atlantic Philanthropies, Madeleine undertook a wide.ranging consultation in the disability and mental health fields, which produced a strategy to harness public, private and non-profit interests to create positive change in the lives of people with disabilities and mental health difficulties.
Health