A 40-year social experiment in which people with intellectual disabilities have lived and learned alongside the mainstream community in Co Kilkenny has come to a sudden and acrimonious end.
Three months after the HSE was called in at short notice to take over the running of the Camphill Communities centre at Ballytobin, near Callan, agreement has yet to be reached over its long-term future.
The sudden change in the way the centre is managed has angered the families of the 17 long-term residents as well as staff who have helped run Ballytobin for decades. Some of these “co-workers” are now in a standoff with Camphill over their rights as staff and tenants of the organisation.
Camphill, an international movement founded after the second World War, is a “lifesharing community” in which children and adults with multiple disabilities live with adult carers. Ballytobin is one of 18 Camphill groups in the Republic and was established in 1979.
The HSE assumed responsibility for Ballytobin last June, after a series of critical reports by the Health Information and Quality Authority (Hiqa). This followed the decision of Camphill Communities to accept, and not to appeal, Hiqa’s decision to cancel its registration unless the operation was handed over to a new provider.
The HSE then told residents, families and co-workers that the live-in/co-worker model previously used by Camphill at Ballytobin would be discontinued “on a phased basis”.
Many of the co-workers have been with Camphill for long periods, as far back as the establishment of Ballytobin, and are living in accommodation provided by the charity. They do not receive a salary and so do not have an employment contract but their living costs are covered, as well as other expenses such as an occasional holiday.
Vacant possession
The HSE is currently in discussions with the Brothers of Charity about taking over the long-term running of the centre but there are no plans to continue with the live-in model of care pioneered by Camphill. A deadline of October 10th was set for the provision of vacant possession so the new operators could assume their responsibilities. That deadline has passed and negotiations are ongoing.
Minister for Disabilities Finian McGrath visited Ballytobin in September at the invitation of families. He says his “main and only priority” is the welfare of the 17 “service users” at the facility.
Brianna Hurley, a 21 year old who is on the autistic spectrum and has lived at Ballytobin for nine years, addressed the Minister in an open letter during his visit. "What I loved about the co-workers was they were open-minded and very creative. Some had their own children and it felt like we were part of the family and I loved when they lived with us together," she said.
“I think it was very special that the co-workers came from school to take care of very lovely people and I also love the way it’s not just a job to them. Instead of the way an institution system is.”
Since taking over the centre, the HSE has appointed an experienced disability care manager and has engaged staff for each of the houses on the site on a 24-hour basis.
The increased dependence on salaried, agency staff has doubled the cost of running the centre, according to informed sources.
The shared living concept enjoys strong local support. "Ballytobin gives people who need support a rich, dignified life on many levels," says local resident Rosemary Ryan. "It empowers them by giving opportunities for real work and for creativity in home-making activities such as making bread or seasonal activities such as candle-making or taking part in a play or celebration."
‘Heartbroken’ couple
Ryan set up a kindergarten in the community and sent their two daughters to attend school up to age 11 in mixed classes with special needs children. Her husband Dieter served as a co-worker in Ballytobin in the 1980s and continues to work with residents on the farm and gardens.
The couple were “heartbroken” when the HSE took over the running of the centre, she says. “We imagined any problems were fixable, and we were shocked that great people have had their good names damaged, perhaps irreparably.”
All of the families of residents want their loved ones to stay at Ballytobin, and most want them to remain with the co-workers. A minority of families feel they have no alternative but to move to the new model of care. Some families are resisting any change to the long-term care arrangements that have been in place for their loved ones.
Camphill is in discussions with 13 long-term co-workers but no agreement has been reached on their future. "We're at an impasse," chief operating officer Joe Lynch admits. "These are people who have given outstanding service and we'd rather talk to them than go down the legal route. But I can't say what might happen in the future."
The co-workers are not paid "in the traditional sense", he says, and therefore do not have traditional employment rights. The charity has rented a house in Carrick-on-Suir to accommodate some of the co-workers for up to a year and says it will provide living supports for three months, but this offer has been rejected.
The families and co-workers are angry that Camphill did not appeal Hiqa's threat to cancel Ballytobin's registration. "Hiqa would only deal with the registered provided, and that wasn't even the local managers in Ballytobin but Camphill Communities of Ireland, " says Brianna Hurley's father, John. "That's where the breakdown happened."
Alleged assaults
The watchdog issued the threat on foot of a highly critical report by its inspectors, which listed a series of breaches including allegations of physical and sexual abuse, intrusive care practices and alleged assaults on residents.
Mr Lynch says Camphill disagreed with the report in some respects but “we understood where they were coming from”.
“We could have gone to court and tried to fight it but we didn’t believe we had a winnable case.”
The parents also took issue with aspects of the report findings but their main grievance was that Hiqa dealt only with the service provider rather than other interested groups. Only Camphill could appeal the findings, and it chose not to.
The charity also shut down the hall in Ballytobin, which was used for events such as marriages, funerals, parties and performances. Mr Lynch says this was for fire safety reasons.
Mr Lynch says the co-worker concept of volunteerism is “fading away” across the wider Camphill organisation as times change and regulation increases. The organisation had 75 co-workers in 2012, but just 45 today.
One compromise proposal suggested by local people is the creation of an “inclusive neighbourhood” to work alongside the registered care provision at Ballytobin, in which co-workers could continue to have a role.
The HSE has warned that if Camphill fails to negotiate a new agreement, it will implement alternative arrangements for the residents and move to an immediate decongregation process.
CARE WORKER: ‘HIQA SHOWED A LACK OF UNDERSTANDING OF WHERE WE WERE COMING FROM
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It was supposed to be a short stint of voluntary work after school but as the months turned into years, and the years into decades, Rene van der Poort’s time at Ballytobin has turned into his life’s work.
“I came for six months, but it turned into 30 years. I met my wife here, raised my daughter here and she shared her upbringing with the residents,” he says of the Co Kilkenny care centre where he has worked and lived with people with disabilities over that time.
Today, however, van der Poort and his family are facing the possibility of being evicted from their home of over 20 years, due to changes in the way the community is run. The care centre formerly run by Camphill Communities of Ireland is now temporarily under the remit of the HSE and is expected to be handed over to a new service provider shortly. The change in management will require vacant possession, meaning van der Poort and other co-workers will have to leave.
“We were very idealistic, I suppose; maybe people think we were naive. I loved the community spirit, the way of doing things together and sharing our lives with people with special needs.”
As a long-term co-worker at Ballytobin, van der Poort has never earned a wage. The charity covers the cost of his board and lodging, as well as covering exceptional expenses such as an annual trip back home to his family in the Netherlands.
The arrangement worked for many years. “This was the way of life that we liked. We always thought Camphill would look after us, but that was back in the days when the structure was different.
Critical light
As times changed, regulations became more stringent and the shared living concept at the heart of the Camphill philosophy came under an increasingly critical light. Last December, a Hiqa report heavily criticised the running of the centre and the watchdog threatened to deregister it. Camphill elected not to appeal and the HSE took over the running of Ballytobin in June.
Van der Poort says he recognises the need for regulation but Hiqa “showed a lack of understanding of where we were coming from”. Some of the allegations in the report are “not correct” or “mixed-up”, he asserts.
Whatever about the co-workers’ views of the report, it is water under the bridge now that Camphill is pulling out. Van der Poort still shares a house with three residents with special needs, other co-workers and – now – agency staff engaged by the HSE. He says he and other co-workers are being made “surplus to requirements” and have been asked to leave.
“It’s terrible to be be told ‘off you go’ with no proper settlement arrangements. I’ve lived and worked to the best of my abilities and I would like to think some form of home-sharing could continue.”
For now, there is stalemate. The co-workers have taken legal advice and are asserting their rights as tenants. Offers of temporary accommodation elsewhere have been rejected. Mediation is ongoing. Van der Poort says he feels disillusioned with Camphill but still believes he has done “the right thing” with his life.
