Making Community Happen Pat Reen Introduction Prosper Fingal is a community based non-statutory organisation which provides a wide range of services and supports to adults with an intellectual disability throughout the North County Dublin region on behalf of the Health Service Executive (HSE). Our core purpose is: “To support each individual to live the life they choose, in the same way and same places as everybody else”. The purpose of this paper is to outline Prosper Fingal’s experience of integrating service users into the everyday life of their communities. This experience is described in terms of the overall cultural shift that has occurred in Ireland in the last two decades, whereby the rights of people with disabilities are starting to be acknowledged and the policy of mainstreaming has been adopted by Government. Within this context Prosper Fingal has not only responded to this change, but is working with service users to push the boundaries further towards their full participation as active citizens in their own communities. Cultural Shift In the overview to the Report of the Commission on the Status of People with Disabilities (Commission on Disability, 1996, p.5) those with a disability are described as “the neglected citizens of Ireland”. The overview goes on to say that many people with disabilities suffer unbearable conditions because of outdated economic and social policies and negative public attitudes. However, it was acknowledged in 1996 that changes, influenced by international recognition that disability is a social as opposed to a medical issue, had started to come about. Pat Reen, ‘Making Community Happen’ Page 1 of 7 According to Quinn and Bruce (2004, p. 315), in more recent times an approach to disability that is “grounded in human rights rather than charity” has gathered momentum. They say that this approach is focused on making people with a disability more visible in society, and in particular using rights as a vehicle to enable this group to take their place in the mainstream. Prosper Fingal aligns itself with this human rights-based approach to disability and believes that in order to take up their rightful place in society, people with a disability should be viewed and treated as full citizens. Prosper Fingal understands citizenship as “what it is to be recognised by other people as an individual who is a full member of the community” and that citizenship “protects our individuality and offers us the opportunity to find out, on our own or with others, what we want to do with our lives” (Duffy, 2003, p.2). The Connection between Culture and Community Living Prosper Fingal believes that the elements, such as the social model of disability, mainstreaming, individual planning etc., arising from the recent cultural shift towards a human rights-based approach to disability, are the key components the organisation needs to focus on to promote active citizenship for people with disabilities. Being an active citizen is, in essence, community living. Making Community Living Happen Prosper Fingal’s commitment to develop Community Living through promoting Citizenship is delivered through the following key measures, amongst others: Consultation Service user consultation plays a strategic part in how to develop connections and new options for our target group. In Prosper Fingal our primary response to service design and delivery is to actively ask service users what supports they need. However, taking into account the essential role that parents/carers play in Pat Reen, ‘Making Community Happen’ Page 2 of 7 supporting a person throughout their life, we recognise the importance of consulting parents/carers. This consultation process is particularly important in order to work in partnership with parents/carers to ensure that the individual with a disability is encouraged and supported to make choices, gain experiences and make decisions as independently as possible. Through a ‘Parent and Family Forum’ which meets on a quarterly basis we develop this ‘partnership for change’ through debate and the exchange of information. The purpose of this Forum is to connect families, allay fears, provide different perspectives, make parents/carers more informed and help them ask questions about the future towards advancing the life of their family member as a citizen, and as a consequence their own family circumstances. Service Delivery Prosper Fingal’s commitment is to person centred services and within that approach developing the voice of the end user. A recent example of this is how we identified a service deficit for how we support the needs of people with mild intellectual disabilities. We responded by inviting each of these individuals to a series of face-to-face meetings with senior management, to provide an opportunity to discuss the issues and difficulties in their lives. These centred around complex social issues such as, finances, relationships, parenting, substance abuse, isolation and coping with their place in society. Evolving from these discussions a new service model is being designed where appropriate supports will be delivered from a community “Drop-In” location. Central features of this new model are that it will have a user-led advisory group for both the implementation and ongoing delivery of the service, flexible operating hours, inhome supports and discretion. This model is a quantum leap from the structured centre-based delivery model. Informing A highly successful initiative that has been in operation since 2007 is the ‘Prosper Times Newsletter’. The newsletter is developed by an Editorial Pat Reen, ‘Making Community Happen’ Page 3 of 7 Committee consisting of service users and parents/carers. The aim of the quarterly newsletter is to include and inform. Service users are invited to contribute articles which can be about any aspect of their life. The Newsletter enhances the partnership between parents/carers, service users, staff and other community stakeholders to whom the Newsletter is distributed. The Prosper Times is distributed to seven hundred individuals and organisations. The Newsletter will also be available on the Prosper Fingal Website, which is currently being updated, with the result that the Newsletter will be available to an even wider audience. An additional benefit from the Newsletter is the creation of a greater awareness of the potential of people with disabilities to play an active part in their own communities. Empowering Through consultation and key working a lot of service users and their parents/carers on their behalf reported isolation and a lack of social opportunities. Prosper Fingal recognised these issues as significant obstacles to community living. In response, to encourage people to make connections, to develop the core skills needed to develop and maintain friendships and to be active in their community Prosper Fingal developed a “Friendship Programme”. In practice, service users are supported to invite a person/s with whom they would like to be friends to do a community activity. They must take on the role of a friend by planning all aspects of the activity including, arranging transport, agreeing meeting times, exchanging phone numbers, managing the money required for the activity and ensuring personal care and safety. The value of this programme to the service users is immense in terms of building social networks, being active in their community, reciprocity, taking on responsibility and being independent. This friendship exercise is developed outside of the control of the provider and the parents/carers. Pat Reen, ‘Making Community Happen’ Page 4 of 7 Access Being an active citizen is dependent on being able to access community facilities. Traditionally service providers such as Prosper Fingal would have been expected to provide specialist transport. While this reduced personal risk, it also reduced independence and capacity to access the community. Prosper Fingal recognises that specialist transport may be required by some individuals, but that for the majority mainstream public transport should be promoted. Prosper Fingal only provides a specialist transport service to 17% of its service users. Even at this we regularly assess the ability and skills of this 17% to ascertain their potential to use mainstream public transport services. This assessment is supported by travel training programmes available to all service users. The skills learnt are transferable to all aspects of a person’s travel needs. In addition none of our Company transport has identifiable logos or markings thus making it less obvious as specialist transport. Mainstreaming Until the 1980’s disability policy was seen primarily as a matter for the Department of Health and its agencies. Since then it has been recognised that the delivery of services for people with disabilities by the public bodies that provide the service for everybody else is best practice and has come to be called “Mainstreaming” (NDA, 2003, p. 69). In line with this approach Prosper Fingal educates service users about, and supports service users to avail of, opportunities in the mainstream as a first option. Therefore service users are supported to become members of mainstream community clubs, groups and societies, to avail of services in the community including health care provision, education and retail and to secure employment in the community. This requires service users to take on new roles – the roles Prosper Fingal has identified as the roles of an active citizen. Pat Reen, ‘Making Community Happen’ Page 5 of 7 Conclusion Rapidly the landscape for people with disabilities is changing. The closure of sheltered workshops, the shift from institutional thinking and settings, the increased exposure to community options and most especially the emerging voice of the individual is creating change. As we have learned in Prosper Fingal, the journey never ends but we are witnessing an increasing acceptance by society at large for people with disabilities to be included in all activities within their communities. The above outlines a number of practical measures that our organisation has applied to advance our purpose. We can only go further if mainstreaming is underpinned by national policy and more especially the practical implementation of those policies. It is in our view incorrect that specialist providers still take on a significant part of the remit for transport, housing, education and training, general health care and employment for people with disabilities. Until the appropriate Government departments fully take on this remit, therefore meaningfully putting policy into practice, full community living for people with disabilities will be restricted. Pat Reen, ‘Making Community Happen’ Page 6 of 7 References Commission on the Status of People with Disabilities. (1996). A strategy for equality, Report of the Commission on the Status of People with Disabilities Duffy, S. (2003). Keys to citizenship, A guide to getting good support for people with learning disabilities, UK, Paradigm Consultancy & Development Agency Ltd. National Disability Authority. (2003). Towards best practice in the provision of further education and training services for people with disabilities in Ireland, Dublin 4: National Disability Authority Quinn, G. & Bruce, A. (2004) Visible citizens: Human rights and disability. In P. Noonan Walsh & H. Gash, Lives and times: Practice, policy and people with disabilities, 315-329, Co. Wicklow: Rathdown Press Pat Reen, ‘Making Community Happen’ Page 7 of 7