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weekend soccer club, ‘The trainees got so much from it. We never took that idea of extra time into consideration. There was a great team effort in the training centre.’ In March 1978, Pat and Barbara published a paper entitled ‘Parental Involvement within St. Michael’s House’ as a response to concerns identified the previous year. This paper, clearly influenced by the new research department, suggested a series of ‘pa- rental involvement projects’: therapeutic educational programmes which the parents could help design and run with their own children. They also recommended workshops for all Unit heads to help them develop skills in working with parents. Parental interaction was recommended. ‘Parents often have very little in common other than the fact they have a handicapped child’, they wrote. ‘This makes it extremely difficult for parents’ views to be truly represented by one or two parents.’ They recom- mended evening meetings for new parents and at least one general parent meeting per year in each unit. In April that year, St. Michael’s House bought an old unattractive former sewing fac- tory in the city centre, just off Mountjoy Square. It was to be renovated as the Long-Term Training Centre for the trainees from the temporary Ballygall Centre. Meanwhile in Raheny, St. Michael’s third Special National School, brand new and custom built, was Above officially opened in June 1979 by Michael Woods, Minister for Health. The children of Raheny This good news for parents of younger children placed great emphasis on early Special National School begin a sponsored walk learning as a means of empowerment for the future, but understandably, those working with Michael Woods, in adult services were unimpressed by the disparity of provision. Minister for Health. Noel McDonnell recalls, ‘There was no such thing as adults, so there was no provision made for them. When they did actually turn eighteen, they were handed over to me as one of the Clinicians. You had to fight for resources.’ It was left to the dedication of the staff, many of whom went way beyond the call of duty to ensure these service users received the attention they needed. 91

Above Ann Kelly, Assistant Care Worker in the Adult Special Care Unit in Kilmacud remem- bers the two worlds of junior DDC and adult SCU side by side: Chris O’Donovan joined St. Michael’s House in 1979 and Parents didn’t even want to come upstairs to see the adults or what their children were managed Ballygall Road going to grow in to. There were twelve adults, mostly girls. Sometimes the staff brought which ran an Adult Day the girls home. This was before there was any respite service, and it was the first time Service with a workshop some of these parents had ever had a break. for over 170 services users. Many of these later ‘This was all on a voluntary basis,’ Adult services worker Chris O’Donovan adds. moved on to Belcamp. ‘There was no time in lieu of wages. But there was great camaraderie, everyone was in this together’ ****** 1979 had been declared the official Year of the Child by the United Nations and St. Michael’s House seized every opportunity throughout the year to both fundraise and raise the profile of the organisation. In spring, noteworthy events included a “night at the dogs” in Harold’s Cross, the opening night of the Rathmines & Rathgar Musical Society’s production of Sweet Charity at the Gaiety and a fashion show at the new Jury’s Hotel in Ballsbridge. The publicity generated attracted the attention of a new arrival to Irish shores, Marks & Spencer. ‘They were opening in Dublin that year’, says Jim Daly, Head of Fundraising, ‘and as a policy they would adopt a charity in each country in which they operated. As luck would have it, their brand name, St. Michael’s was the same as ours.’ The jointly sponsored Right One of the events St. Michael’s House ran to mark the Year of the Child in 1979 was a fashion show at the new Jury’s Hotel in Ballsbridge and with the proceeds raised on the night they bought a mini bus. One of the fashion models hands John O’Brien, Chairman the key to the vehicle. 92

M&S Roadshow in the RDS in September was a big success and provided huge publicity Below for the new store and for St. Michael’s House. Marks & Spencer continued to support Mary O’Conor joined St. St. Michael’s House with catering goods and supplies, saving the agency a great deal of Michael’s House in 1978 money. as Speech and Language Therapist with Edel O’Dea. In 1979 Patricia Doherty outlined the different entitlements of children and adults in Initially working with children in the Junior Special the St. Michael’s House newsletter Cope. The Domiciliary Allowance of £35 a month was Care Units, children on wait issued to a child aged between two and sixteen. At sixteen an “adult” qualified for the lists for admission and with Disabled Persons Monthly Allowance (DPMA), a medical card and free travel. Up until school children, they also then, the DPMA had been issued to parents, many of whom paid it directly to the organi- implemented the video- sation. That year, in order to give more responsibility to these adults, it was decided that tape course “Putting two the money could, with the written permission of the parents, be paid directly to them. words together” devised by the Research Department Cope continued to advise parents on practical matters, and to share the organisa- to help the children begin tion’s enthusiasm for research and innovation. Readers were introduced to L’Arche, for to use sentences. example, a French-based community structure, which highlighted the values as well as the rights of people with intellectual disabilities. In another article, Noel McDonnell Mary would later become explained the Scandinavian approach of ‘Normalisation’, which aims to provide normal the Clinic Manager of life opportunities and experiences for everyone. ‘To achieve this objective,’ he wrote, St. Michael’s House . ‘the staff assume that they do not know the needs of those in their care, and as a result, they are prepared to try any method if it shows a favourable response.’ The ‘ordinary life philosophy’ was supported by both Roy McConkey in the Research Unit and Pat O’Loughlin in Social Work, the latter writing that it ‘suggests a structure for increasing the probability that in time disabled people will live as valued members of society rather than as devalued clients.’ This commitment to education and research underpinned the growth of the Clinic and, in turn the services. In November David Kenefick became the first full-time Training Officer. His main task was to design and run courses for new and existing personnel and included parents where appropriate. He also supported relevant training courses outside the organisa- tion. ‘I worked very closely with Roy,’ David recalls. ‘There were projects for parent training and staff based around language or use of play.’ Mary O’Connor also worked with Roy developing courses and saw the positive impact on, not only the social skills of service users, but how families experienced support as well. ‘Up to about 1980 children were considered to be on the waiting list until they went into an actual building,’ says Mary. ‘So we decided that just because you don’t come to a building it doesn’t mean that you don’t get services.’ There was a growing belief that parents could play a role in the development of their own child, with help and guid- ance from St. Michael’s House. We worked with children in the Junior Special Care Units and with children in their homes who were still on the wait lists. The aim was to give parents the skills to support their child’s learning, as early as possible and the response from families was very positive. In 1980 St. Michael’s House celebrated its twenty-fifth anniversary. The Board planned a huge celebration and the fundraisers set a target of a quarter of a million pounds for this special year. The main events of their twenty-fifth anniversary celebrations took place over the last weekend in September 1980. On the Saturday night the President of Ireland was the guest of honour at the sold-out James Galway concert in the RDS. The concert was followed by a special after-show supper in The Lawn Restaurant for 400 guests. 93

Above On the Monday evening, founding members, staff, families, and friends gathered in St Patrick’s Cathedral for an ecumenical thanksgiving service. In his address Chairman Mrs Patrick Hillery, wife of Joe O’Brien’s inspirational message was, ‘I pray with you that the involvement and in- the President presented with teractions between the individuals and organisations that have made the past twenty- flowers at the James Galway five years so memorable will continue with the same impetus and spirit over the next concert in the RDS to mark quarter of a century.’ the beginning of the 25th Anniversary celebrations The sense of history was palpable when founding member Patsy Farrell addressed of St. Michael’s House. the packed Cathedral: Page Right The Ecumenical Thanksgiving Quite a few of us here will remember our very small beginnings, when a handful of par- service held in St. Patrick’s ents with special problems met and gave each other strength and encouragement by ex- Cathedral to mark the changing experiences as well as listening to words of wisdom from authoritative sources 25th Anniversary of St. … I feel that tonight we meet here to thank God for all that St. Michael’s House stands for Michael’s House. and pray that our children may become more and more accepted by a society which is, I am glad to say, gradually becoming more aware of them. The anniversary year provided great opportunities to reflect on what they had achieved so far and to acknowledge the challenges that lay ahead. It raised their profile and afforded more opportunity to raise funds. They needed every penny: more property was required again in the early 1980s. The old Cheeverstown building needed re-furbishing and the catering and adult spe- cial care units had to be re-located. They also wanted to sell the Grosvenor Road School as even the Department of Education agreed that the building was unsuitable. The list was endless. 94

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Right Full Address for Ecumenical Service delivered by Patsy Farrell founder of St. Michael’s House delivered 29th September, 1980. 96

Above Pat Maloney, CEO, Brian Farrell and Patsy Farrell. Left Mrs Patrick Hillery is introduced to Dympna O’Brien. 97

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Page Left and Right Parents, volunteers, children and staff visited the President Patrick Hillery in Áras an Uachtaráin on the 25th Anniversary of St. Michael’s House. 99

Above The first of the five “Glens” on the Ballymun complex was opened in March 1980. The founders, Management Glenanaar was a single-storey building, custom built to meet the residents’ needs. The and Board of St. Michael’s staff team, led by Tom Burke included a combination of new and experienced skilled House visiting Mr. Fergus O’Brien, Lord Mayor of personnel, hired by St. Michael’s House and funded by the Department of Health. Almost Dublin and his wife in the immediately it became what was then called a Crisis Intervention Unit. Mansion House on the year of the 25th Anniversary of Paddy Corcoran, who became service manager years later in the North-East Region, St. Michael’s House 1980. joined St. Michael’s House in 1980. On his arrival the Glens were little more than a building site, ‘The builders were in the house to put down carpets when we were moving 100 in.’ Paddy remembers that the standard of accommodation was better than anything else he had seen. ‘Clients had their own bedroom en suite and the bungalows were decorated like any ordinary home. In the chaos of the high demand for services everything looked so normal’. The unit catered for ten people at a time who could stay for a weekend or a week, depending on the needs of the family. In the first year an estimated 300 people used the service. This service proved a godsend for a lot of families, many of whom had never had a break. Staff were galvanised by the positive response, and the direct connection with families meant that staff regularly stayed well beyond the normal working day. With countless potential clients on the waiting list, the work was unrelenting, and the ten-bed complement was often over reached. While for parents and service users the Glens offered welcome respite, for some staff, particularly in the Clinic, this residential complex model was considered inappropriate.

Head of Psychology Michael Murphy recalls clinicians’ misgivings, ‘The pivotal decision really was whether to go for such large residential complexes or establish houses in the community. By and large that is the model we have gone for – that suburban house in the community.’ One of the more exciting developments in the 25th year was the purchase in February of the old Coastguard Station at Brittas Bay, Co Wicklow. It was situated six miles from Wicklow town at the silver strand and about a mile from Brittas Bay public beach. As Pat O’Loughlin, a Social Worker who had for many years pushed for the purchase of a holiday home and spearheaded the purchase, described: “The house itself stands on 1.5 acres on the coast side of the road with a private pathway to the beach. It has twenty bedrooms and could comfortably sleep forty people. There will be some alterations necessary to provide a dining-room and improve the kitchen, but the house is in excellent repair and we hope it can be used for all of this year’s holiday arrangements.” The house was officially opened June 23 1981 with the arrival of a group of children from Raheny DDC. During June, July, and August, about 300 children and adults availed of at least one week’s holiday. The local Brittas Bay community gave St. Michael’s House Above a great welcome: donating cots and kitchen utensils, and the Lady Captain of Blainroe The Old Coastguard Station, Golf Club presented them with a cheque to purchase swings and a paddling pool. Help Brittas Bay, Co. Wicklow with cooking and cleaning was provided on a daily basis by the local ICA and ISPCC and purchased by St. Michael’s by members of the Lott family who lived close by. The social workers described a great House in 1980 as a holiday sense of freedom and adventure that the children experienced – the gardens, the trees, home for the children and the fields, the beach, and the house itself with all its nooks and crannies and “hundreds adults. It provided many years of holidays for children of rooms” and respite for the parents. 101

Right Children arriving for their weeks holiday at Brittas Bay. Patsy’s son Brian was still living with his mother on the farm in Gigginstown, and she continued to actively support a number of different organisations. While Brian never attended a regular St. Michael’s House service, he did spend time in their new holiday home in Brittas Bay. Speaking on the occasion of Pat O’Loughlin’s retirement in 1999, Paul Ledwidge said, ‘It says something about his incredible generosity that summer after summer Pat volunteered so much of his time to ensure that families had a break.’ ****** More houses in the community was indeed the policy being pursued at the time, and new initiatives were launched to improve integration, including CARA, Break Away, the Friendship Scheme and the development of the Home Teachers department. CARA (Community Attitudes to Retarded Adults) was supported with £20,000 in funding from the Health Education Bureau, and a further $4,000 from UNESCO. It aimed to investigate attitudes held by the public towards intellectual disability, and to help steer those attitudes towards increased awareness and interaction. This would contribute to the broader success of community living: if attitudes were negative and unaccepting, there would be little chance of creating a conductive living environment for service users. As part of the project, an excellent resource pack for schools was published to increase students’ understanding and awareness. Short training courses for staff in Switzers and Arnotts titled ‘Helping Customers who are Mentally Handicapped’ alerted staff to the difficulties people with intellectual disability might experience when shopping and suggested ways of overcoming them. In addition, evening classes were run in ten Dublin adult education centres aimed at any adult who would like to know more about intellectual disability or who had an interest in voluntary work or a career in that area. Participants were given some background on intellectual disability generally and what it really meant for a person living with an intellectual disability. The highlight of the programme was the opportunity that people with intellectual disability were given to speak for themselves on what they liked, their work, interests, 102

and aspirations. A recently published study at the time, ‘Our Lives’ (Lundstrom-Roche, IYDP, 1981) had looked at how people with intellectual disability viewed their lives, leisure and work opportunities and it showed how little contact there was between them and their local community, and how isolated they felt as a result. The evening classes were a small step in addressing this issue. “Bob McCormack worked on the Cara project” says Roy McConkey of his former col- league, “and that was quite ground-breaking. The aim was to encourage integration and to project the message that people with learning disability were not that different. It helped make teachers and communities aware. In many ways it was the ground for an ordinary life to happen for people.” Break Away was an important new development which also facilitated integration of children in the community, and it complemented the respite services. It was set up by a group of social workers from St. Michael’s House and other agencies in the Eastern Health Board. Families (including those with no experience of disability) were identified and given training on how to look after a child with an intellectual disability along with 24 hours back-up service during placement for a number of weekends in the year. Jodie Foster from the research department involved in the scheme wrote in Cope: “The host families were mainly married couples who had more than three children them- selves. They were people who felt they had something to offer a handicapped child in terms of care, attention, and a happy home. Host families and children were carefully matched, based on matching the needs and resources of the children and host families. Individual children were selected on the priority basis that they or their families needed or could benefit from the break. As a result, most of the children placed required a great deal of care.” The scheme was highly successful and showed that given opportunities, sensitive Above supports could be provided by persons who want to share in the care of children with intellectual disabilities. More possibilities would be expanded from this Break Away Anne Walker one of the first concept which included: family care for adults, babysitting, overnight placements, crisis Occupational Therapists to placements, and the provision of continual supports for families of children and adults join St. Michael’s House. with intellectual disabilities. The Friendship Scheme was set up to offer companionship and friendship to an adult with intellectual disability if it was felt it was needed. An action research project of 6-month duration, the volunteer friend would undergo a 5 week introductory course designed to give a basic understanding of intellectual disability and served as a screening process of the volunteer. At the end of the programme the volunteer would be interviewed to determine whether their suitability and commitment met the required standard. The idea was that the Friends would share an activity for a period of time in the company of the adult with intellectual disability. Activities might include listening to music, shopping, going to the cinema, or whatever interested the person with intellec- tual disability. The hope would be that the friendships built up during this time would be of sufficient strength and depth to continue on after the 6 month period of the action research project. Home Teachers were introduced as part of the Early Intervention services and they continued to work with the families and members of the Clinic team on supporting the child’s development. Mary O’Connor, who initiated the service, and later Ann Walker who worked in the department, saw the long-term benefits in the family homes: ‘It was 103

Below really about support. Part of the home teacher’s role would be to bring a bag of toys and Copies of the St. Michael’s to offer advice as to what was the next step for the child, to assess where they were.’ House Research Bulletin with the latest Once a fortnight they would call in and bring their skills to the kitchen table, like from the department, working on the child’s play and their social skills and communication. In this way they published quarterly. were supporting the family as well. It was an important development and would have long-term benefits stepping out of the norm and into the family home”. 104 There was a lot of positive talk about the various courses that were run for parents by St. Michael’s House, says David Kenefick, Training Officer. “The home teacher again would help the parents to use what they had learnt on the courses and to implement it with their child. So they were really in a position, and still are, to knit all those pieces together for the family” As progress was being made to shift attitudes and improve community integration, Roy McConkey’s Research Unit was encouraging good practice and continuing to influ- ence the services. There were monthly seminars, “Journal Clubs”, exploring the most recent international studies and developments. Roy travelled to New Zealand and presented a paper on ‘Communication – Children with Special Needs’ at a conference organised by the Wellington Graduate Medical School, and presented again to the Psychological Society in Auckland. He gave lectures in the University of Canterbury, Christchurch and Macquarie University Sydney, Australia. The reputation of the research department was spreading. At home, his own research continued to directly involve all teachers, speech thera- pists and psychologists. By participating in the research, they could implement the new approaches and methods on the ground, and this became an integral part of the service provided to families. In three of the schools, studies were conducted on the children’s use of language. In this project Roy, along with Mary O’Connor produced a training package on developing the language skills of children. This novel and instructive approach aimed to pass on skills to parents and staff. It consisted of a series of six, 25-minute videos augmented by written material. During the course, methods for assessing a child’s present language skills were demonstrated and teaching techniques and learning games were illustrated. The training course was made available nationally to other organisations providing services to children with intellectual disabilities. Around this time Roy also published two articles, ‘Learning to Pretend – Observing Children’s Play’ and ‘Developing Children’s Play’ and was working on a book co-authored with Bob McCormack ‘Breaking Barriers: Educating People about Disability’. It would be published in 1983 and was aimed mainly at profes- sionals working in services for people with intellectual disabili- ties: giving practical guidance on how to create novel, yet effective ways of telling the public about disability.

Continuing to raise awareness at home, Roy was one of the main consultants on a radio broadcast produced by RTÉ. The series of ten programmes was specifically aimed at parents of children with intellectual disability. They aired each Saturday morning on Radio One taking the form of a magazine programme with emphasis on practical advice and suggestions. Dr. Patricia Sheehan was also a consultant on some of the radio programmes, and her contribution to the September 1980 issue of the The Irish Medical Times captured the momentum being felt at the time. ‘What’s new in the field?’ she asked, in her two-page chronology of the organisa- tion’s growth. ‘More public awareness of the needs of people who are handicapped, more integration into the community, not isolation into obscurity. It will be interesting to see what the next twenty-five years will bring forth…’ 1981 was designated as International Year of Disabled Persons, prompting services worldwide to create a plan of action at the national, regional and international levels, with an emphasis on equalisation of opportunities, rehabilitation and prevention Left St. Michael’s House, Calendar of events for International Year of Disabled Persons. 105

of disabilities. Rising to the challenge, St. Michael’s House mobilised a year long pro- gramme of events. One of the first outings was a hostelling weekend away in An Oige Hostel, Tiglinn, County Wicklow. At great weekend was had by all, with self-help and independence being key outcomes of the learning. David, one of the students from Ballymun school described “We went out through the forest and trees to the waterfall, the water was running over the stones and… we never stopped laughing all weekend”. Right Led by Paul O’Mahony, Principal, Bernard Greene, Maura Hooper, Lorna Blackhall, Carmel Bradley, Maureen O’Connor, Michael Howard, John O’Sullivan and Susan Corrigan (Staff and Volunteers). Right Service Users Art competition sponsored by Bank of Ireland and Competition from the “City Life” sponsored by Dublin Institute of Adult Education. With the success of their anniversary year and boosted by twenty-five years of experience, St. Michael’s House was able to buy two houses in 1981: the premises ad- joining the Long-Term Training Centre in Charles Street and a house at Lorcan Avenue in Santry. Purchases like these were something they hoped to repeat annually, and would be necessary given the aging profile of the parent population as highlighted in a recent internal report. Some of the capital came from the sale of the old school site in Finglas which had finally sold, but additionally loans had been secured on the back of a promise of state funding. Meanwhile across the city, inadequate adult services continued to cause concern. The temporary portacabins at Ballygall were in a dire state and this Adult Special Care Unit moved to yet another unsuitable temporary premises in Bonnybrook. Pat Moloney hoped that this short-term solution would force the Department into providing some- thing more permanent and appropriate. 106

Christy Lynch, an Occupational Therapist who many years later went on to become Above CEO of Kare (a service for intellectual disability later founded in Kildare), worked in Mary Loughran, Principal Bonnybrook and recalls having to buy two portable chemical toilets because there were outside Hackettstown House, no permanent facilities, a fact he finds hard to comprehend today. ‘Children were cuddly Skerries temporary site for and warm’, he says candidly. ‘They were the profile for the fundraising. Nobody wanted a new St. Michael’s House to go into the unit for adults with severe disabilities. We Special National School. never brought visitors there and I think that had an effect on staff morale.’ One success story was the Long-Term Training Centre at Templeogue. Funds were sourced from the European Social Fund to build a brand-new training centre next to the old house. When the building would be complete, Barry Desmond Minister for Health would present St. Michael’s House with best building design for disabled people awarded from the National Rehabilitation Board (NRB). In July a fourth special school was opened at Hacketstown overlooking the sea at Skerries. Like the centre at Kilmacud, it was an old house but with a large garden surrounding it, a feature which the first school principal Mary Loughran made full use of when the children moved in after renova- tions in October 1981. It wasn’t the perfect building, but it addressed the urgent need of this community which had been beyond the reach of regular St. Michael’s House services. Throughout this time the relationship between the association and the state became more complex, as opinions differed greatly between the two about the direction future Left Hackettstown House, Skerries was a temporary site for a new St. Michael’s House Special National School. services should take. Writing in 1981, Pat O’Loughlin criticised a recent report by the Eastern Health Board for being at odds with progressive thinking and practices for working with people who were intellectually disabled. “The report appears to be very poorly researched, has many generalisations and inaccuracies and would appear to be at variance in many instances with current pro- gressive thinking and practice in the provision of services” 107

Right Junior Special Care Unit Kilmacud visit from the Duchess of Luxembourg June 1982 (Simon Quinn, in her arms). Below Confirmation Day for 16 children of the Junior Special Care Unit, April 1981. Performed by Auxiliary Bishop of Dublin Joseph Carroll. Children: Simon, Aoife, Peter, Michelle, Robbie, Anna Jean, Joan, Anthony, Clare, Naomi, Shane, Paul, Brian, Dessie, Eamonn and Mary. 108

But while theory and the direction of future services was important, the practicalities of running St. Michael’s House were the responsibility of Pat Moloney. While welcoming front-line innovation, Pat had to pressure the government just to maintain services. His immediate concern was the projected shortfall in funds from the Department of Health for the following year. They were promised almost £3 million in funding in 1982. But Pat knew their spending would be well beyond that. The Department was already £136,000 behind in its payments. Finance would be ‘severely limited’ he explained at a meeting in November 1981. Each unit management committee would have to carefully review every aspect of their budget. For the first time staff cuts were on the agenda. Bus escorts had been the target of previous cutbacks. These important staff escorted service users on their bus journeys and were the daily point of contact and support for many parents. By March 1982 most of the bus escorts attached to Grosvenor Road School were Above gone. CIE, who ran the bus service, told St. Michael’s House that they would not be able to maintain the service without them. The parents in Rathfarnham, however, refused to Christmas 1981 with Pat allow a similar reduction within their special care unit. Following a parent meeting in O’Loughlin playing Santa for March, Philip Elliott, the Chairman of Parents Fundraising Committee wrote to all par- the children of the Special ents in the Unit asking them to sponsor the bus escorts’ salaries from their child’s DPMA. National School Ballymun. Kay Keogh, whose son Paul attended Rathfarnham, insists they had no choice. ‘We funded the escorts, which we did then and which we still are doing, all the years since … but it was great because as parents it meant our minds were at ease knowing that there was someone on the bus to help.’ In Raheny, Mary Smallwood managed to keep her bus escorts and continued her regular meetings with them and the drivers to solve any issues that might have arisen 109

Below on the bus journeys. “If a particular parent was having trouble in the morning with their child, we knew about it on the day. The bus drivers and escorts were part of my team.” Children, teachers and staff of the Special National Making bus escorts redundant was just the beginning, however. Unit heads were School Ballymun 1982. frugal, those in charge of the purse strings even more so. As always, the fundraisers had to carry on relentlessly. ‘Oh God I nearly got divorced for fundraising!’ says Chris Paul O’Mahony, Principal O’Donovan. ‘My young lad told me once that I should be charged with torture for taking centre front. him out on Sunday mornings to collect money at the church gate!’ Pat Maloney wrote in Cope at the time about the commitment and enthusiasm of the staff. “I have had the opportunity of working in different countries, I have never in my life, in any country I have ever been in, seen anything like the quality of the staff in St. Michael’s House, and the tremendous understanding of the fundamental principle of relationship”. The dedication of the staff was invaluable, but even their efforts could not offset the predicted cutbacks. In August 1982 the Department of Health demanded staff reduc- tions of 2 per cent in 1983, with the possibility of a bigger reduction in 1985. These cuts could not but have a serious impact on frontline services, and the organisation still faced into a prediction that year that 250 people would require residential places within the next 5 years. Despite the financial forecast, the house on Lorcan Avenue in Santry was opened. On the Southside they bought 4 Ailesbury Lawns in Dundrum which would also be used as a crisis intervention hostel for respite. Also, by then all five Glens had been built, and staff recruited to open the second house ‘Glenamoy’ under the supervision of Paddy Corcoran. They worked with both adults and children who presented with a multiplicity of complex needs, medical, social and behavioural. 110

The other three houses remained empty. Despite the organisation’s attempts to get Inner Left: around what was then a public sector recruitment embargo their requests to open the rest of the Glens went unanswered. At last, in November 1982 Chairman Joe O’Brien Clare Mc Guane, known for her received a letter from the Minister for Health, Dr Michael Woods: warm and friendly personality receptionist of Goatstown The Government have decided, as a special exceptional measure, to exempt new priority Head Office started with St. projects from the terms of the embargo … I will therefore be allocating the necessary Michael’s House in 1969 funds to enable thirty additional heads of staff to be recruited so that your new services can come into operation as soon as possible. This was a return for Pat’s persistence Above and was good news too for parents. But to The sensitive and caring voices certain innovative forces working within of St. Michael’s House. St. Michael’s House, the Glens represented a medical care model, with high concentrations Left; “Catherine O’Reilly, of staff soaking up a lot of valuable funds. The neat row of houses, which would provide receptionist Ballymun Clinic relief to families desperate for support was seen as a retrograde step from their es- and Administration “has the responsibilty of controlling poused community-based approach. all the telephone calls at the Ballymun site . A very experience Understandably, for many parents these internal differences were incidental. Their switchboard lady Catherine primary concern was that their child received a service. But a gradual attitudinal change has the all the personality to in parents did become apparent in the early 1980’s, especially when faced with the pos- make a success of this very sible withdrawal of services. vital and sensitive position” Quote taken from notice of her appointment Cope 1983. Left: Presentations of Diplomas J.P. O’Brien presenting graduates from the Short Term Training Centre Ballymun with their certificates at the end of their training. This was their first graduation ceremony held in the Shelbourne Hotel 1982. 111

Above The Glens; one of the first and only example of clusters of houses for residential living. All five were now built and the government had committed funding for staff to open the last three houses. Above and Inset Right Excerpt and photograph taken from article written in Cope magazine by parents whose child John was offered a place in one of the second houses to open in the Glens; “Glenamoy” in early February 1981 under the Head of Unit, Paddy Corcoran. Cope 1981. 112

Left Left to right: The Staff of the Glenanaar opened in March 1980. Nora O’Flaherty, Tom Burke, Head of Unit, Paddy Corcoran, Deirdre Durnay, Aileen McAteer, Teresa McDonnell and Margaret Power. Left Archbishop Dermot Ryan meets some of the residents of the Glens with Dr. Denise Kavanagh, Psychiatrist and Eamon Fitzgerald, Chairman of the Board of Glenamoy. Bottom Left Staff and residents at the Glens. 113

Below The rights-based approach began in Europe and America. Younger parents began to recognise that these children had a right to appropriate services. The parents expected Special Parents Meeting answers from the organisations, be it St. Michael’s House or John of Gods, rather than at the Shelbourne Hotel approaching the State bodies who could legislate on these issues. St. Michael’s House confronted this challenge by convening a special parent meeting in the Shelbourne Hotel In excess of 800 parents and on 28 October. It was a far cry from the parents’ meetings twenty-seven years before in staff attended the meeting the Country Shop across the road. at the Shelbourne Hotel on the 28th October 1982. A short film was shown outlining some of the developments and services within St. This tremendous gathering Michael’s House, and Pat Moloney described the limitations imposed by the national heard Pat Maloney, CEO, economic downturn. He reflected on the philosophy of St. Michaels House “to keep each Peter Byrne, Chairman of the person in their family home where possible, while at the same time getting the best care Board and Dr. Barbara Stokes and attention wherever available….it has implications, they have got to learn to live and discuss the development of be as independent as possible to enable them to integrate happily in society… and today St Michael’s House and their with these cutbacks, we now face the greatest challenge the organisation has faced “ plans to meet the present financial situation. A video He explained the need for parents to lobby their T.Ds describing the needs of their chil- on the history and services dren and the importance of services like St. Michael’s House. He also informed them of the of St. Michael’s House Department of Health’s demand for staff redundancies by March the following year. produced by Jim Sherwin was seen for the first time. “We have 1,200 people receiving direct services and we have approximately 27 people each year whose parents are too old to cope or will die who will need accommodation in Photo and article appeared the community. There is a 2% cut back right across the board on Health Services. We in Cope Christmas, 1982. must cut back staff by 2%, that is a directive, and this is what we have been requested 114

to do. What is our response? Our response is to first say to the Minister that this is not acceptable to us. We are in the process of making a detailed case to the Minister and his officials showing why it is grossly unfair on an organisation like St. Michael’s House to have this 2% applied to us as it would to a Health Board with a 400/500-million-pound turnover …. We find this particularly unfair on an under-developed service such as ours” The meeting was a reality check for the parents. But in trying to keep all channels open, Pat believed they had to know. Peter Byrne, parent, and member of the Executive Committee was also a speaker on the panel. Speaking of his own experience as a parent of his son who in 1969 aged 7 had suddenly fallen ill with an incurable brain disease, he urged the parents to lobby and support the work of St. Michael’s House. “In the dramatic expansion of St. Michael’s House over the last 27 years or so, there have been times undeniably, where the lines of communication between top and bottom be- came clogged. This is a natural consequence of ambition and the need to cater for as many people as possible, but it ought not to be interpreted as an excuse for people opting out. As a parent and member of the Executive Committee, I share your hopes and your fears, your aspirations, and anxieties for the years ahead. But of one thing I am certain, now as never before, the active support of every parent in St. Michael’s is needed. Let us hope that out of this meeting tonight, will come the commitment and the will to provide it.” In response, the panel, which also included Barbara Stokes, Noel McDonnell, David Kenefick, and Joe O’Brien, listened to emotive contributions from families describing their urgent needs. While not every parent who wanted to share their experiences got an opportunity to speak that evening, It was agreed to hold more meetings early in the New Year for smaller numbers in the different units to give all parents a forum to have their voice heard. ******** In early January, 1983, St. Michael’s House lost their second Chairman, Joe O’Brien, who had been ill for some time. At a commemorative gathering on 12 January, Mairtin McCullough spoke of ‘His great humanity and his love of the staff and of people, espe- cially the handicapped, knew no bounds. He was one of the greatest and best friends we have ever had.’ ‘He was a very sensible man, very committed to St. Michael’s House,’ recalls Paul Ledwidge. In his early days there the young accountant remembers driving Joe home from the committee meetings, ‘I learned more about St. Michael’s House on those jour- neys between Goatstown and Artane than I ever learned anywhere else.’ Eamonn Fitzgerald, a businessman, who was a member of the Finance Committee, was appointed as temporary Chairman. He was acutely aware of the need for growth and of how the dynamic mix of interests, opinions and sheer will within St. Michael’s House would influence that growth. While not formally part of the organisation’s management, the ‘Clinic’ branch of the organisation (which consisted of clinicians, psychologists, therapists, and medical staff) had become a major influence. Their advice and thinking steadily filtered through the units to the frontline, and the Clinic was earning a reputation for innovation both na- tionally and internationally. 115

Below David Kenefick believes that Barbara’s unconventional approach facilitated this pro- As part of Roy McConkey’s cess. ‘Some other Medical Directors thought that Barbara Stokes was far too liberal with longitudinal study into the staff … that psychologists and social workers should have been kept in their place.’ communication with older children, he asked teachers There was a certain chemistry within the clinical staff which was also an impor- to apply his research in tant factor. While there could be differences of opinion, their common commitment to the classroom. Below improving conditions and services for people who were intellectually disabled spurred Teacher and children from them on. They stayed after hours; they lunched together in the Botanic Gardens and Grosvenor Road School. socialised together in Kavanagh’s pub, occasionally with their Medical Director by their side. As Christy Lynch recalls: 116 We used to meet at weekends, go out socialising together … and there was a great sense of teamwork and a feeling that we were ahead of the rest. Nobody stood on pedestals. Hi- erarchy comes as things get bigger and systems and structures are necessary. Back then there was so much innovation and energy. However, many staff on the frontline felt that the Clinicians, on their higher wages, lived in ivory towers, and did not understand how difficult the reality was for those on the frontline to whom they gave advice. Nonetheless, the Clinic was clearly having an effect. David Kenefick was offering training courses to new staff working in the Glens. Mary O’Connor cites another practical benefit: “Lamh, the Irish sign language was driven by two speech therapists from St. Michael’s House, with a number of people from other services in the early 80s. And this made a big difference to the frontline staff on the ground in terms of communication and people with intellectual disability” Roy McConkey had completed a longitudinal study on Adults talking to Children in- volving older children which enabled them to compare the ways in which various groups of adults talked to children; that is student speech therapists, teachers and mother and fathers. This research was having a positive effect on the front line particularly in the language teachers used with their students; using more short, informa- tion giving statements and commenting more on what the child does or says - the results showed the children start to use more advanced language. Roy was now lecturing to speech therapists in Trinity College and undergraduate psychology stu- dents in UCD. He also continued to do talks around the country to other organisations on his latest re- search projects. However, the cold realities of survival continued. St. Michael’s House reluctantly issued redundancy notices to six members of the catering division. Many units had no hot lunches while the schools had to make their own dinners for more than 250 pupils. Operational funds were also restricted. Denise Kavanagh who joined as Clinical Director in 1981 recalls that residents in the hostels had to contribute one third of their DPMA as ‘rent’ and those who earned a salary had to pay a third of their earnings.

Left Mr Barry Desmond, T.D. Minister for Health and Social Welfare, turning the sod in Belcamp, Eamon Fitzgerald, Chairman of the Board, Barbara Stokes, Noel McDonnell and Pat Maloney. There were some glimmers of hope, however. The new Minister for Health Barry Below Desmond turned the first sod for the new purpose-built Adult Unit at Belcamp in June, The Management, an event appropriately held during a national publicity campaign to highlight intellec- Administration Staff and tual disability. Also, the new custom-built training centre in Templeogue would be ready Clinicians of St. Michael’s House outside the Goatstown by the end of the year. Head Office before the staff were moved to Conrad Road “The only development during the lean 1980’s” said Pat Maloney about the decade. in Kimmage to allow the renovations to begin 1983. Goatstown too was given a major £600,000 facelift. (Ironically, European Social Funding was available for this while the temporary units which urgently needed reno- vation had to wait.) The staff were all moved to rented accommodation in Conrad Road in Kimmage. 117

Right Goatstown under construction, 1983. Right Reception room before the restoration of the 19th century murals were uncovered. Right The unfolding and restoration of the murals in the boardroom in Goatstown painted by one of Gasper Gabrielli’s students who worked in Ireland in the early years of the nineteenth century. (The boardroom before the renovations and after). 118

A secret treasure, apparently only known to Barbara Stokes, lay within the walls of Goatstown’s main reception room. Hidden underneath the wallpaper were early nine- teenth century murals by a student of Gasper Gabrielli, which Barbara had seen when she danced there at the age of twenty one. The National Gallery agreed to restore the murals the following year much to her delight. “The wall painting at St. Michael’s House and those at 49, Merrion Square, apparently by the same hand and thought to have been commissioned by the same patron, Sir Robert Way Harty, are interesting and now rare examples of surviving early 19th century do- mestic decorations in Dublin. As such they have their place in a tradition of fresco work, dating from about 1720, which began with Williams van der Hagen, and continued on with, among other foreign artists, de Gree, Zucchi, Waldre, until in 1806, Gaspar Gabrielli was brought to Ireland by Lord Cloncurry to paint the decorations at Lyons House, Co. Kildare. It is to a follower of Gabrielli that the decorations at St. Michael’s House and at 49, Merrion Square, are most usually ascribed. Lack of documentation and other surviv- ing examples for comparison preclude, at least for the present, a more precise attribu- tion. Gabrielli returned to Italy in 1819 and the indications are that the murals were painted after his departure. Strickland records only one pupil of Gabrielli’s, this was John Doyle, who left for London in 1821 to become famous as HB the caricaturist”. Excerpt taken from Research Paper prepared by Cynthia O’Connor, 1985. The continual expansion of St. Michael’s House inevitably led to an increase in rules Below: and regulations. Legislation was increasingly imposing accountability and transpar- ency and more formal standardised management structures. Each new statute, decision Goatstown building, and recommendation further impacted on Barbara’s passionate influence and energies renovations were completed which had permeated and enriched the entire organisation. Her remit was becoming September, 1984. restricted to solely medical spheres. Roy McConkey believes that the new management structures were a kiss of death to the innovative spirit pioneered by Barbara, ‘She was very adept at bringing around and encouraging people who had a similar sort of ethos … It wasn’t manipulative com- mercialisation. She tried to bring out the best in her staff and trusted people to get on with it.’ The organisational blueprint for the future of St. Michael’s House came in the Hay Report, which was de- livered to the executive in the summer of 1983. It recom- mended a sharp refocusing of existing resources into a business model designed for survival within the existing stark economic climate. The report unravelled the existing network of depart- ments, functions and resources and suggested a more robust and accountable form of management. While the programme that St. Michael’s House was delivering was not in question, the report had concerns as to the means of delivery. ‘The complexity of total programme resources’, it said, ‘makes it necessary to break them down into major divisions in order to simplify the resource management task.’ 119

Right Jim Sherwin, RTE, Patricia Sheehan, Frank Kelly, Actor and staff and volunteers of St. Michael’s House about to start the fundraising cycle from Kilmacud. Right Eamon Fitzgerald, Chairman, with Eamon Kelly, Actor, Patricia Sheehan and Jim Sherwin, RTE and Barbara Stokes. Right And they’re off ! 120

Their proposals made business sense, but for personnel in St. Michael’s House who had been accustomed to less structured, personalised approaches, it raised serious concerns. Discussions at executive level created as many divisions in the group as were recom- mended in the report. The very essence of the organisation was at stake, but so was its survival. Finally, the Executive Committee endorsed the changes, creating a structure that would last for the next fifteen years. Paul Ledwidge was appointed Deputy Chief Executive Officer. A new Executive Management Committee would deal with the running of the business, within three clear divisions, led by three new Divisional heads. In May 1984 Dr Denise Kavanagh was appointed Manager for Adult services, David Kenefick for Residential Services, and Patricia Doherty became Divisional Head of Children’s Services. Some within the organisation felt that the management consultants had employed an abstract business perspective, and many were unhappy with their recommenda- tions. According to David Kenefick, the other big concern was that the Clinic would lose influence. Within a year of the report, Patricia, Denise and David found themselves on the man- agement side of the clinical fence and they were set the task of implementing the new design. ‘On the one hand I was very interested in being part of the management of the organisation’, says David. ‘But on the other I wasn’t totally convinced that the structure that was being set up was the best. I didn’t particularly want to get into disputes with the Clinicians, which is where I had come from. It was a difficult year.’ While there was some initial confusion, the expanding management team in Goatstown was led by the experienced Pat Moloney, and he soon established who was in charge. Pat had been their Chief Executive Officer for a decade as both state funding and waiting lists increased. Now, with senior respected Clinicians working as managers he was leading a more balanced team equipped to give a holistic service to their community: When I joined in 1974, it was a service for children with a few adults. It was primarily a Clinical service at a very high level, a result really of Barbara’s contribution. The con- tribution I gave to it was to broaden the scope, revise the structures. One of the things I did was build up a service that had more balance. People might say there were too many managers – too many chiefs and not enough Indians – but I structured it as I thought fit at the time. In implementing all these internal changes Pat never lost sight of their relationship with the parents. The assumption that St. Michael’s House could provide from the cradle to the grave had been undermined by political and economic realities; families had unin- tentionally been given a false sense of security. And so, not for the first time, a renewed sense of commitment to the parents was generated. There would be more parental in- volvement at Unit level, new forums for communicating, including publications such as Cope and more information sharing meetings. Ways were actively sought of ensuring that the concerns of parents would be heard at a higher level, both within the organisa- tion and in the wider political arena. Around this time the Department of Health under the instruction of Barry Desmond T.D. Minister for Health and Social Welfare published a green paper on services for people with disabilities in Ireland “Towards a Full Life”. The aim of the report was to provide “basic sign posts for all sections of the community to ensure that the 150,000 disabled 121

people in Ireland lead the fullest life possible”. The report looked at the Government policy of the day and the changes that were required to ensure that persons with dis- abilities had access to services that would ensure equal access and full participation in society. Residential facilities were examined and the minister was satisfied that there was an urgent need for additional residential facilities in all health board areas and a 5 year development programme was set up to meet those needs. A critical review of the opera- tions of the training centre and community workshop system was also looked at with a a view to identifying improvements that needed to be made. The report acknowledged the “enormous contribution the voluntary sector had made and were continuing to make to the provision of services to people with disabilities and the government committed to supporting the continuation and strengthening of this involvement into the future”. While Pat was pleased to see the report acknowledge the work of voluntary services like St. Michael’s House and the funding that was required for people with intellectual disabilities to live a full life, he didn’t feel optimistic given the lack of funding and the cut-backs to staffing he had been asked to implement. Meanwhile, at the AGM there was a fresh call for new blood. Eamonn Fitzgerald had been elected Chairman and Peter Byrne, a parent on the Board retained as one of five vice-chairmen. ‘Peter was a rock of common sense,’ says Eamonn many years later of the former sports journalist. ‘He had a son Keith who had acquired brain injury, they were so good to him. Peter was a fantastic background worker and his wife Tina too. He took over as Chairman and served for two years.’ Another businessman who believed the service had to be run as a business, Peter was determined to steer clear of vested interests, weaknesses he says that have helped to undermine many an association in the past. ‘What struck me was the absolute dedica- tion of the staff’, he recalls. ‘I suppose also what occurred to me in those days was a somewhat overbearing element of medical involvement in the management side. Today, you have medical involvement, but it is management of medical, not management of the organisation.’ The newly restored murals in the boardroom at Goatstown greeted the fifteen mem- bers of the executive committee – now renamed as the Board of Directors to distinguish them from the new Executive Management Committee – as they gathered for the first time in August 1984 in the renovated building. As the new management structures were being implemented, Barbara announced it was time for a change. She requested a secondment to become Medical Director of Cheeverstown, an arrangement in which she would step away from day-to-day work at St. Michael’s House while continuing to be employed by the Eastern Health Board. ‘They did have huge problems’, says Pat, referring to Cheeverstown, ‘and Barbara saw that they needed direction. So, she became their Medical Director for two years before retirement.’ That October the Board reluctantly but unanimously approved her request, and Barbara accepted their proposal that she remain as Chair of the Research Committee. “Barbara was quite a unique person” described Roy McConkey. “I would credit her with a lot of the innovation, the dynamic and the connecting of everything… Pat was more of a consolidator; both great people to work with, so much talent to tap into and there was this spirit among the place: the ‘I can do’ spirit.” 122

“This was driven by Barbara” Roy explained, “she was very adept at encouraging staff, and she trusted their instincts. She believed we could be the best because the children and adults in our service deserved the best. This innovative spirit was a great talent that she applied not just to me but to all who worked with her.” ‘She was not only our Medical Director, with her unique style’, says Patricia Doherty, ‘but among her generation she broke the mould. She had a clear vision about the rights of children with intellectual disability. She was a great mentor and despite the lack of resources and huge areas of need, she created a culture that made it a great place to work. If you had a good idea about services, she was always willing to listen. She allowed everyone to contribute. She fostered a culture of passion, hard work and innovation – Be- cause of this St. Michael’s House grew as a centre for leadership in the field of intellectual disability.’ An era had come to an end with Barbara’s departure. With the exception of ongoing Board members Pat Richardson and Declan Costello (whose position as President was ceremonial by this stage), the original founding members had all but moved on. The organisation would now be led forward by Pat Maloney with his newly struc- tured team, and they had a legacy to continue: one of three extraordinary decades in which St. Michael’s House had grown from an informal association to become national experts in their field. Staff, Volunteers, and Parents had seen it all first-hand, and were armed with the belief that anything was possible if you fought hard enough for it. Barbara’s enthusiasm had left its mark with all whose lives she touched, and those at Cheeverstown were to benefit from the experience of this adventurous spirit who had dedicated almost 30 years of her life to St. Michael’s House. Early in 1985, the organisation welcomed a new Adult Special Care Unit in Belcamp to accommodate 70 people, and a new workshop which began construction in Glasnevin. Some of the builders on site were employees of a new company established by St. Michael’s House in 1983. At a time when jobs for able-bodied service users were scarce, Northbrook Industries took on trainees and was able to fund salaries through AnCO, the forerunner to FÁS. A less welcome development in a review of policies in 1985 was the agreement that it was no longer possible for St. Michael’s to guarantee cover for its community under the often-used term “from the cradle to the grave”. ‘It would be unfair’, Pat said at the time, ‘to allow parents to continue to believe we would provide a service irrespective of the financial constraints of the organisation’. ‘I would have coined that term’. Pat Moloney reflects, ‘and it would have been an aspiration of mine… but that would have implied a social policy underpinning that on the Government of the day, and we never came near that policy then or today. It was naturally taken up by the parents and rightly so. That’s what parents wanted – that security and knowledge. Parents had every right to be disappointed.” The economic climate had taken a turn for the worse. Noel McDonnell, who stepped in as Barbara’s successor, had begun urging Pat to pressurise Government almost im- mediately and described the funding stalemate as impossible. Already, every corner had been cut, every cost-saving exercise carried out. But the years of funding shortages that would challenge the organisation’s tenacity were only beginning. At the time, a small group of executives from organisations like St. Michael’s House and medical clinicians like Barbara were the key drivers of Government lobbying efforts; 123

Dr. Barbara Stokes at her this strategy would eventually diversify to directly involve parents and wider political last Board meeting and Retirement ceremony pressure. Upper left However bleak things were financially, some service users had found things to look forward to. In April, St. Michael’s published a book “Let’s Make Friends”, involving social Patsy Sheehan, Consultant skills and relationship training for service users. and Eithne Clarke, Parent . In June, the European Special Olympics took place in Dublin. Over 2000 athletes from Upper right 21 countries descended on Dublin for the games, with 95 medals brought home by the Volunteers and Board athletes of St. Michael’s House. It was the same month as the 30th anniversary of Patsy Members Violet Gill and Irene Richardson with Patsy Farrell. Farrell’s original ad to the Irish Times. Produced that year by St. Michael’s House with assistance from the Health Education Bureau and directed by Jim Sherwin was a special Lower left documentary, “A long way to go”. The film focused on the lives of people with intel- lectual disabilities, the recent developments of services and highlighted the challenges Dr. Barbara Stokes, Declan Costello SC and Peter Byrne, facing organisations like St. Michael’s House. As the board and Patsy Farrell who had Chairman of the Board. been invited for this special viewing of the documentary sat in the new boardroom of Goatstown, it made very sombre watching. Yes, a lot had been achieved and a great deal Lower right had changed in the past 30 years, though then as now, the documentary title couldn’t Pat Moloney addressing have reflected it better… there would still be a long way to go. the Board to celebrate Barbara’s 30 years service. Page right: Patsy Farrell, Founder and Dr. Barbara Stokes. 124

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