A Retrospective Review — 2005/2006

by Anne McCarthy Research Officer Stewarts Hospital Services Ltd Palmerstown Dublin 20

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This is a good time to look back over the past year and see where we’re at in terms of new philosophies, methodologies and mindsets of care. Three mindsets emerged into clear focus and appeared to absorb everything in terms of development and philosophies for service delivery.

  1. Person-centered-planning
  2. Inclusiveness
  3. Participation.

Nothing new, you might say, but the ‘how’ and ‘to what extent’ they are being practised is most definitely where we are at, as evidenced in the many events that took place over the year. Perhaps the following four events will help to illustrate this fact.

  1. St Michael’s House organise a 50th birthday celebration conference entitled Facing the Future, in association with the National Federation of Voluntary Bodies, in Clontarf Castle Hotel, 30 November–1December 2005.
  2. The Leadership to Implement Person-Centered-Planning Series by John O’Brien—Seminar One is held at The National Institute for the Study of Learning Difficulties, TCD on 3rd May 2006 and entitled Organising for Person-Centred Support.
  3. The National Federation of Voluntary Bodies Research Committee organise a seminar entitled Inclusive Research, held in Stewarts Hospital on 22 May 2006.
  4. The Minister for Education and Science, Mary Hanafin, TD, launches The National Institute for Intellectual Disabilities in Trinity College, Dublin on 25 May 2006.
The St Michael’s House 50th Birthday Celebration Conference:

This highly enjoyable event, Facing the Future, gave an excellent illustration of how an organisation has re-invented itself in order to take on the challenges posed by these new mindsets of support and care for people with intellectual disabilities. The conference sub-title From Theory into Action and Practice could have been an equally appropriate title for describing the work and orientation of this well respected service. While most of the speakers represented the host organisation, there were a number of noteworthy guest presenters from other service agencies.

Professor Jim Mansell of the Tizard Centre in the University of Kent pointed out that the quality of individual experience is the only key and the only objective. During the course of the seminar we learned that person-centred planning is about supporting people to cope with the chaotic reality of life, and that this objective is distinctly different from STANDARDS, which are service delivery regulations to be satisfied and boxes to be ticked.

All the presentations emphasised that Lifestyle is the product of our service provision and that our task is not to write a document but to change people’s lives. Inclusion, independence and choice are the keys to this lifestyle. Encouraging our service users to join us in the everyday tasks would be the best way to start. This approach can be used in any situation and is independent of a person’s level of disability.

This seminar was about real people doing real things with real outcomes. The programme covered the entire life span, leaving us all in no doubt that service provision has been revolutionised over the last couple of years. Umbrella titles for the sessions were: Developing person-centred services; Where and with whom we live; Intimate relationships; Exploring living options; Sexuality knowledge and protection; Children’s services; Services for older people; Organisational development; In the workplace; Behaviour that challenges us; Exercising our rights; and The challenge of Autistic Spectrum Disorder.

The (US) Quality Council’s Personal Outcomes Planning appeared to be the popular choice of methodology for many of the service-provider presenters.

The camaraderie between service user and provider was tangible throughout all events. There were a number of service-user presenters and participants, and the atmosphere was one of celebration—celebration for the organisation’s 50th birthday, but perhaps more for the evolution and enrichment of life for those with a disability in 2005.

The 2005 Chairman of The National Federation of Voluntary Bodies, Mr Brendan Broderick, acted as Rapporteur. His erudite references to music and poetry made this a classic, rendering this two-day event unique for having a full, wide-awake and interested attendance at the closing session.

As a public relations celebration, this was a happy, interesting and sharing occasion. While I returned from the conference delighted and encouraged by what I had heard, I couldn’t help thinking that as a conference, it was, perhaps, rather lopsided. We had heard of person-centred projects that looked great from the person-centered perspective, but nothing about how they scored in the standards audit—Were all the health and hygiene standards adequately achieved in the projects administered by service users, and if so, how?
I found myself questioning the fact that these programmes have not been universally implemented to the same degree throughout the whole of Ireland – Why?

  • Is there another point of view?
  • If it is so good, why is this quality outcomes programme not compulsory for all service providers?
  • Is there a better way to provide services while meeting the individual needs of our service users?
  • If there is, where is it?

These new philosophies of person-centered-planning, inclusion and participation are now sufficiently established to risk a contentious and strong debate that highlights the contrasting viewpoints regarding their implementation. A debate that examines all the perspectives of service delivery, as well as all the professional perspectives, and does so in partnership with persons with intellectual disabilities and their advocates, would appear to be the important next step.

Organizing of Person-Centred Supports (John O’Brien)

John O’Brien, the doyen of normalisation and community living, addressed an enthusiastic group in the National Institute for the Study of Learning Disabilities [NISLD] in Trinity College Dublin on 3 May 2006. This was Part One of a double bill; the second section scheduled for June was to focus on the importance of good listening.

Part one was entitled Organising for person-centred support. It addressed the structural and organisational aspects of the person-centered jigsaw, indicating that the process is incomplete unless all factors are addressed.

This laid-back, chatty seminar nonetheless delivered a singular, persistent message, highlighting the reality factor at the root of person-centered provision, i.e.

  • Individualised supports equal removal of group-centred service provision
  • Individual empowerment equals status quo disempowerment, or at least reorientation.
  • Above all, the determination to reach this goal must exist and the process must be gradual, taking one step at a time. The visual example of doorways opening ad fin gave an insightful image for his message.

Day-long, one-presenter seminars can be risky, and Dr O’Brien had said everything he needed to say by lunchtime. What he had to say was indeed well worth listening to, but it can be difficult to continue momentum into the afternoon. Perhaps a new voice after lunch would have added a certain frisson to the day.

Seminar about inclusive research

The third seminar to feature in this retrospective review took place on 22 May in The Vera Gallagher Conference Centre at Stewarts Hospital Services Limited.The day was hosted by the National Federation of Voluntary Bodies Research Committee and was entitled Inclusive Research.

Dr Valerie Williams and Ms Kerrie Ford, from the Norah Fry Research Centre at Bristol University, gave the first presentations. From the first moment, it was clear that this was a seminar with a difference. They spoke a language that everyone present could understand. Long words from the jargon were translated into clear, understandable words, as they told us about their research projects in Bristol and their ‘Nothing about us, without us’ philosophy.

The amount of work being done at the Norah Fry Centre is impressive, and it illustrates the considerable contribution made by researchers with intellectual disabilities. The Centre is an example of how inclusive research manages to deal with the realities of life within the culture of intellectual disability. I use the word culture advisedly, because, once the communication barriers are challenged and overcome, there is no area of research or service provision that cannot include persons with intellectual disabilities.

We were told how to include colleagues with intellectual disabilities in our research projects and what their training entailed. Mary Kealy and her team from the Brothers of Charity Services in Co. Clare, Joe McGrath, Irish Seed Savers, Co. Clare, and Dr Kelley Johnson, TCD, told us about their partnership approach to research. They explained their services without walls and their small-scale initiatives that are leading to big outcomes. This was followed by a practical workshop in planning an inclusive research project. Kerrie Ford put us straight on certain technicalities, as she assessed our efforts. This was a highly successful day, leaving those who attended in no doubt that this is the way to go into the future.

I am also, however, left in little doubt that the feat of establishing and integrating this research into the higher echelons of professional academia will be one of the larger battles ahead. I have but one question for those who may challenge the validity of inclusive research, and it is this: How valid is the non-inclusive research literature on intellectual disability, since it only represents the opinion of those who have never experienced life as a person with an intellectual disability?

I am, therefore, delighted to report that the first step in this battle has already been won with the official opening of the National Institute for Intellectual Disabilities (NIID) at Trinity College, Dublin.

The National Institute for Intellectual Disabilities, TCD

‘A place where people with intellectual disability, families, academics, professionals and service providers come together to promote full inclusion through education, research and advocacy’
The Minister for Education and Science, Mary Hanafin TD, officially opened The National Institute on Thursday 25 May 2006. The NIID was originally known as the National Institute for the Study of Learning Difficulties. NIID now offers a full-time university course for people with intellectual disabilities. In her opening address, Minister Hanafin said: ‘The National Institute for Intellectual Disability is a truly pioneering initiative that gives great credit to the foresight and commitment of Trinity College in promoting educational inclusion for persons with intellectual disabilities.’ She continued, ‘I am particularly struck by the emphasis placed on inclusive research, based on involving people with intellectual disability and their families in identifying and conducting research on their own needs. I believe this will have a significant impact on many lives in Ireland and much further afield.’

The NIID’s aim is to identify through research and education the central issues affecting the lives of people with intellectual disability and to ensure their full inclusion both inside and outside the college. The Institute offers the Certificate of Contemporary Living, with the key aim of improving the employment opportunities for its graduates. At present there are twenty students attending this course. Staff from voluntary agencies—St John of God Carmona Services, Stewarts Hospital Services, Sunbeam House Services and Moore Abbey, join the TCD staff in teaching this course. The NIID students are also supported by ‘student mentors’ from across Trinity, and are fully included in the social and cultural life of the university.

The NIID has won European Commission Marie Curie Fellowships for two major projects to develop it as a centre of excellence in the area of inclusive research. It emphasises that people with intellectual disability will be fully involved in deciding on the kinds of research and also on the way in which it is to be carried out.

Conclusion

Midsummer 2006 marked the beginning of an era of implementation, practice and consolidation. Those firmly established philosophies, methodologies and mindsets of care that reflect person-centeredness, inclusion and participation for people with intellectual disability are now practised, applied and lived.
There are plenty of grounds for optimism looking into the future, as the outcomes can only benefit all concerned. There will be exciting and challenging times ahead as the personalities and viewpoints of those with intellectual disabilities evolve and blossom, assisting and enlightening all of us in support and service provision.

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