Tony Darmody tells the story of the Kerry Parents and Friends Association from 1973 to the present.

The Beginning

Prior to 1968, as was the case in most other parts of rural Ireland, children with an intellectual disability were either kept at home or placed in residential Centres far from home. Many adults with an intellectual disability were inappropriately placed in St. Finan’s Psychiatric Hospital in Killarney. In 1968 a residential facility for children with an intellectual disability was opened at St. Mary of the Angels in Beaufort, near Killarney by the Franciscan Sisters of the Divine Motherhood at the invitation of the then Bishop of Kerry Most Rev. Dr. Moynihan. There were no supports available for parents and families of people with an intellectual disability in Kerry at this time. Some professionals involved with St. Mary of the Angels decided that something needed to be done to address this deficit so in 1973 Kerry Parents & Friends Association was established. Over the following 12 months more than 30 branches and committees were set up throughout Co. Kerry.

The main focus of the Association following its establishment was the support families of people with an intellectual disability throughout Kerry. The proceeds of fundraising activities helped fund projects such as a swimming pool and chalets at St. Mary of the Angels. By 1978 St. Mary of the Angels was operating at full capacity and many of the children who had been there since 1968 were now young adults. A service for young adults with an Intellectual Disability was urgently required in Kerry to release places in the children’s services at St. Mary of the Angels. It was agreed that Kerry Parents & Friends Association & Friends Association would develop a residential service for 10 young adults in Tralee.

Mount Eagle Lodge

Someone on the Executive Committee had heard of an organisation called the National Association for the Mentally Handicapped of Ireland (NAMHI) later renamed Inclusion Ireland. In Kerry little was known about NAMHI in 1978 and Dr. Norrie Buckley was despatched to a meeting of NAMHI to enquire about funds for the proposed residential service in Tralee. Of course NAMHI had no money for such projects but by sheer coincidence a letter had arrived at NAMHI from Australia advising that money had been left in a Will for ‘mental handicap services’ in Kerry. Dr. Norrie Buckley is probably the first and only person to have come away from a meeting of NAMHI with some money to set up a service anywhere in Ireland. Shortly afterwards Mount Eagle Lodge in Tralee was purchase, renovated and opened as a residential and day service for 10 young adults with an Intellectual Disability. Today there are 5 residents and 25 people supported in day programmes in Mount Eagle Lodge. From 1978 to 1990 services were funded by the proceeds of fundraising activities and a capitation grant from the local authority.

The need to further expand services for adults with an Intellectual Disability became very clear shortly after Mount Eagle Lodge was opened. The St John of God Order set up services for adults in Tralee around 1980 and in January 1984 Fr. Corridan Centre in Rathmore was opened by the Kerry Parents & Friends Association as a day service for a number of adults with an intellectual disability from the locality. The Association’s Executive Committee decided that a Co-ordinator should be appointed to manage the services in Tralee and Rathmore and to develop new services as required. The author joined Kerry Parents & Friends Association in April 1984.

Over the following 6 years new residential and day services were developed by both the St. John of God Order and Kerry Parents & Friends Association. A Vocational Training Centre, supported by the Department of Education was opened in Killarney. The Old Monastery was acquired in a derelict condition in 1984 and was developed as a day resource centre for 50 adults with an intellectual disability. The Association’s Central Administration is also located in the Old Monastery.

Parents & Families

Kerry Parents & Friends Association has always recognised and respected the vital role of parents and family in the lives of people with an Intellectual Disability. This respect underpins the ethos and philosophy of the Association and our service models. Perhaps the most important initiative taken by the Association was the appointment of Rosaleen O’Connell as family liaison worker in 1985. Being a mother of a young man with Down Syndrome Rosaleen was readily able to empathise with and relate to parents. She travelled the roads of Kerry all hours of the day and night supporting families. Rosaleen had a very simple philosophy – do something, however small, for families in need. Rosaleen saw to it that many supports, great and small, made daily life a little easier for families under pressure coping with a son or daughter with an Intellectual Disability living at home. Families are always the real heroes and deserve all the support they require at all times. It was not unusual to see Rosaleen’s husband Michael (Mick O’Connell) visit families with her. Can you think of a better way to break the ice in a football mad county? Kerry Parents & Friends Association was to the forefront in developing a family support service based on identifying the real needs of families and taking a pragmatic approach to addressing these needs. Today the Association has 2 Community Nurses who continue and develop the work pioneered by Rosaleen and whose Job description could be simply stated as ‘doing anything possible to support the people supported in our services and their families’. Like Rosaleen before them Sheila and Catherine support our service users and their families 7 days each week in a manner way beyond their job description. Incidentally Rosaleen, Michael and their son Diarmuid were featured in the first edition of Frontline and appeared on its cover.

Returning Home

For many years children with an Intellectual Disability in Kerry had to travel long distances to access special schools. Many were placed in residential centres outside the county returning home for Christmas, Easter and Summer holidays only. This was heartbreaking and very traumatic for both the children and families. The opening of special schools and later special classes throughout Ireland enabled children with special needs to receive education in their local community or at least in their native county. St Francis Special School opened at St. Mary of the Angels, near Killarney, enabling children from South Kerry to attend daily or on a 5 day residential basis. Nano Nagle Special School was attached to the Presentation National School in Listowel with the children from both schools sharing many facilities and classes. Many of those leaving St. Francis Special School attended a Vocational Training Centre and other services run by Kerry Parents and Friends Association in throughout South Kerry.

It has been my experience that many great ideas have their genesis in a chat over a cup of tea. Such was the genesis of Tigh an Oileáin (Island House) which is located on Valentia Island on a site generously donated by Mick and Rosaleen O’Connell. There was many a discussion at tea break about people returning to their native place. Rosaleen O’Connell was central to these discussions and the idea to build a residence on Valentia Island for a number of young adults from Valentia and South Kerry was developed.

Tigh an Oileain opened in 2003 and overlooks the lighthouse at the entrance to Valentia Harbour with the Blasket Islands and Skellig Michael in the distance. It is a stunning location where the scenery and seascape constantly changes. Today Tigh an Oileáin is home to 6 young people who are welcome in their native community and who play an important role in that community. Visiting the community hospital, actively involved in Tidy Town, maintaining a sensory garden in the local Church of Ireland are just some of the activities undertaken by the residents at Tigh an Oileáin. The residents also care for their two donkeys, chickens, doves, glasshouse and tunnels. Eggs and organic vegetables are sold locally.

Each resident has an on.suite personalised bedroom. There are recreation rooms for community or individual activities. Residents have free access all facilities in Tigh an Oileáin and visitors are welcomed and are invariably offered tea by the residents. Yet Tigh an Oileáin would not comply with the recommendations of the Congregate Settings Report. Nobody from the Congregate Settings Working Group visited Tigh an Oileáin or spoke to the residents or their parents. They might have learned something valuable if they did.

Kerry Parents & Friends Association will continue provide a range of living options for those supported through our services based on consultation with them and their families.

Into Old Age

Kerry Parents & Friends Association supports adults with an Intellectual Disability/Autism. Age ranges from 18 to 81 years. Recent survey results show that up to 100 of those currently supported by the Association will require elder care services within 5 years. Many of our existing residential facilities are unsuited for eldercare and will be severely challenged to meet HIQA standards.

It is the policy of the Association to support those who use our services for life including end of life care. We have developed care plans which include fully availing of GP and community services such as HSE Community nurse and home care teams. New residential facilities have been designed specifically for the care of older people with an Intellectual Disability/Alzheimer’s. Glebe Lodge in Castleisland is one such facility where high support and end of life care is provided to a very high standard. A similar facility is currently under construction in Rathmore and will completed early in 2012. Both of these facilities fall outside the recommendations of the Congregate Settings Report but again nobody from the Congregate Settings Working Group visited Glebe Lodge or consulted with the residents or their families.

Into the Future

Kerry Parents & Friends Association is a small service provider that has always tried to respond to the needs of people with an Intellectual Disability and their families with very individual and appropriate responses. Political correctness was never our underpinning principle. Our philosophy could be summarised as ‘keep the person with a disability and their family central to and involved in all discussions and decisions and you will not go too far wrong’. I believe that this philosophy has worked well in Kerry. By agreement with HSE.South the Association will take a lead role in Kerry in supporting adults with an Intellectual Disability and Autism.

Today Kerry Parents & Friends Association supports more than 250 adults with an Intellectual Disability/Autism and their families in many locations throughout Kerry. Our supports and service models now also underpinned by Personal Outcomes and recommendations of reports such as ‘New Directions’ and the soon to be released ‘Value for Money’ Report. We have invested much time and energy in developing and training our staff in Personal Outcome Measures and in training and facilitating those we support in self advocacy. This is the way forward and Kerry Parents & Friends Association will rise to the challenge despite further savage cuts to our State funding. We are up for the challenge.