The first Irish Center for Independent Living (CIL) was established in Carmichael House in 1992 by and for people with disabilities with the main aim of ensuring that people with disabilities achieved Independent Living, choice and control over their lives and full participation in society as equal citizens.
CIL: Establishing the Personal Assistance Service
The Personal Assistance Services that are now available in Ireland came into existence in 1992 with a two-year pilot project that was initially run by CIL. It was recognised that in order to further the Independent Living Movement in Ireland, a consumer controlled Personal Assistance Service would be essential. The key idea was a service which would assist disabled people in all aspects of daily living, provide assistance rather then care and is directed and controlled by the service user.
The programme, funded under the European Union Horizon Community Initiative, started in December 1992. It involved 29 leaders and 45 personal assistants. The programme aimed, for the first time in Ireland, to develop a range of personal assistance services managed and controlled by people with disabilities. It also sought to ensure that personal assistants were themselves educated and trained in the skills, knowledge and attitudes required to provide a professional Personal Assistance service.
This CIL action research programme aimed to promote and develop the concept of independent living for people with significant physical disabilities and, in particular, to research, design and implement programmes aimed at ̇Providing a range of appropriate Personal Assistance services (PAS) and educating both Leaders (Participants with physical disabilities) and Personal Assistants (PA) in the acquisition of positive attitudes and skills pertinent to the realisation of efficient services in this area.
The Final Evaluation conducted on this project in 1994 highlighted a number of benefits and results. These were:
- The positive effect on individuals being able, for the first time, to take control of their own lives and exercise choice
- Ending of dependence and ability to see independent living as right not a privilege.
- Enhanced social participation and involvement.
- Improvement in education (27.5% were able to use the PAS to attend college).
- Improvement in training options (18% were able to avail of further training).
- Improvement in employment access and conditions (50% noted enhanced employment options as a result of the project).
- Improved subjective sense of awareness and empowerment.
- Development of knowledge and skills.
There is no doubt that this project made an important impact in the quality of life for those participants with disabilities. It also provided training and employment opportunities for the Personal Assistants – as well as providing professional training and skills in this new field. At wider level the project indicated the potential for development and expansion of the concept and practice of independent living. The improvement in opportunity offered by this initiative would resonate in CIL and provided the foundation for much later progress.
After the success of the pilot project the administration of Personal Assistance was entrusted to Service Provision Agencies, such as the Irish Wheelchair Association, and Enable Ireland, although some regional CILs remained involved with Service Provision. Today the Service Provider assesses a potential service user for need; the Leader is then allocated a number of PA hours by taking into account his or her individual requirements and the number of service hours available to that user. Once a Leader has been approved for funding and his or her requirements have been established, the Leader enters into a contract with the Service Provider, undergoes a period of training, and then Personal Assistants are either employed directly by the Leader or recruited through the Service Provider. While the Service Provider directly employs the Personal Assistant, the Leader acts as line manager, and directs the work of the Personal Assistant.
Testimonies from Founding Members
Declan O’ Keefe - ”I became involved in the Independent Living Movement in the late1980’s and was one of the founding members of the Center for Independent Living in 1992. From the beginning, we were aware of the importance of Personal Assistance and of the vital role of PA’s in enabling those of us with disabilities to take control of our lives. Indeed, it was CIL’s pilot programme, INCARE, which empowered me to live an independent life. This I consider to be my greatest achievement to date.”
Hubert McCormack – ”As a founding member, I was part of a splinter group in the late 1980’s driving the founding of the Irish CIL movement in 1992. I got involved in the CIL movement for I considered it as being a direct response to addressing disabled peoples needs, enabling me and other people with disabilities to move beyond residential care to environments where we could gain full and total control over our own lives. I may not have realised this at the time, but I remained involved because I suppose, like many of my peers, I was dis-satisfied with existing services and the way in which they were controlled and provided. The first issue we began to examine as a group, was housing and the lack of accessible accommodation. Very quickly we realised that suitable housing would be pointless to people with significant physical disabilities without the presence of a Personal Assistance Service, and this was one of the key factors which led us to establishing the INCARE programme, one of CIL’s first undertakings. The INCARE programme examined, implemented and secured the provision of a personal assistance service. In turn, this led to the launch of the Irish Center for Independent Living. I have been working with Muscular Dystrophy Ireland since 1989, primarily in the area of administration, desk top publishing, Information Technology and website design. I designed the current MDI website, which I maintain regularly and I am also the editor of the “MDI News Update” a two-monthly publication, which is distributed nationwide amongst our membership. I have always worked in the disability sector, previously with the Irish Wheelchair Association and The Chesire Foundation in Ireland. Being part of the CIL movement , its founding and the setting-up of the PA service. And thus enabling people to have a choice and take control over their lives is what I consider to be one of my main achievements.”
Ursula Hegarty (RIP) – ”I got involved in the Center for Independent Living back in the late 1980’s. I was also one of the founding members in 1992. My involvement in the movement was greatly influenced by one of my closest friends who considered it to be the best way of progressing forward. I was also supported and encouraged by some of my closest friends and peers. The thing I like most about the CIL movement is that all members are striving towards achieving the same thing, being independent and maintaining uniqueness. In the course of my involvement, I have drawn great confidence and encouragement from others. Central to CIL is that there is room for difference, and in doing so it manages to encompass and represent a wide base of disabled people very successfully. As for the future, I would like to see the Center for Independent Living being run by and representative of disabled people. The establishment of an Independent Living Fund would also be a very important goal.
Peter Moore – ”I was one of the founding members of the CIL movement in Ireland. I was motivated by the need to be independent of my family.
The Independent Living Movement and its philosophy have enabled me to gain control over my own life. I work as a writer. In this respect, I have been successful in having a book published in 1990 entitled ‘Rebel on Wheels’. . Even though this was long before the founding of the CIL movement, I employed a PA to assist me, without whom I wouldn’t have been able to complete the book. Through my involvement in the CIL movement, I am now writing in a way that I thought I couldn’t. On a personal level I am involved in a relationship that would not have been possible without the personal assistance service that was initiated in 1992. I say this because I was always of the opinion that I would not get involved in a relationship for somebody to care for me. Because I have personal assistants, I am no more dependent on my partner than if I was able-bodied. For the CIL movement the future won’t be easy, especially when faced with the contracting Irish economy. In its future direction the CIL movement will have to become more politically active.”