VICTORIA WHITE: It seems we now know how to regulate but not how to celebrate

The Health Minister Simon Harris should sit down with the HSE and Camphill communities to reach an agreement that respects the rules but respects joy even more, writes Victoria White

IT WAS a day my husband and I will never forget. We were on a visit to a Camphill community in a lovely, leafy part of the country as part of our research into possible futures for our autistic son, Tom.

We were met by a smiling woman and allowed to visit two residents who were busy in the kitchen preparing for dinner that evening. Two men, one large, middle-aged and non-verbal , the other small, young, loquacious, with Down Syndrome, were copying by hand, from a book, the recipes they needed for dinner that night.

It was such a happy scene. The peace, the quiet, the careful planning for a dinner which was hours away. Until the younger man stood up and announced, “Tea break!” And what a tea break! We gathered around a big, wooden table for our tea and coffee and passed around a tin of delicious home-made biscuits. There was such joy in that room. The chat ran freely between residents and staff. I remember one Down’s Syndrome woman expressing her worry about forthcoming changes in the house and being respectfully comforted.

She was listened to as a friend, not a client. This was clearly a community in which staff and residents — or should I say, disabled and non-disabled residents — were all in it together. They expressed their affection openly, simply cuddling one non-verbal intellectually disabled woman when she got agitated.

When we left we were full of hope for the future. Imagine if our son could one day be part of a community like that, we thought.

That’s why I was so disappointed when I heard that Camphill in Ballytobin, Co Kilkenny, has had its licence cancelled by the HSE following negative findings in a Hiqa report. Its 19 residents, many of whom have been there for 20 or 30 years, can remain in the facility under the management of the HSE.

While Camphill says that HSE staff will likely stay on through the transition, volunteers will not, though some of them have been resident here for decades. Camphill is not Camphill without volunteers. It was clear to me on my visits to Camphill communities that volunteers are the single essential difference between these residential facilities for disabled people, run according to the philosophy of Rudolph Steiner, and traditional facilities run by salaried staff.

Volunteers create a situation in which there is no “them” and “us”. Camphills typically have more volunteers than paid staff, and nearly half of the volunteers are long-term residents, just like the disabled residents.

Many of them have given what Camphill calls a “Life Gift”, the gift of their working life, to be part of this community. In addition, there are short-term volunteers who typically work a year and are often from all over the world.

Clearly, if this weren’t managed properly and overseen by Hiqa it could cause problems. However, none of the Hiqa reports I have read, either about Ballytobin or any of the other Camphill communities, focus on issues with volunteers.

By contrast the most recent Hiqa report on Ballytobin says the training of new volunteers was “very thorough” and adds that “staff were very knowledgeable on the residents’ care needs and the commitment of all was evident.”

Garda vetting was in place for all staff. Two references were on file for all staff and volunteers, apart from one volunteer, who had been working in Camphill for more than 30 years.

Hiqa cautioned, however, that “goals for learning and development of the staff members’ competency and the goals for improving the service” were not always clear.

The exact reason for the cancelling of Ballytobin’s licence is not obvious. There was evidence of a financial irregularity whereby some residents’ monthly payments to the centre had not been revised downwards as they should have been, but Camphill paid all the money back.

Issues do recur in the inspection reports, however. The fact that “learning from incidents” is inadequate seems to be behind Hiqa’s frustration. While in their most recent report they said “significant progress” had been made, some improvements were still required “in relation to safeguarding practices and risk management.”

The management of medicines was far from optimal and this included some residents being administered a sedative on consecutive nights, rather than only when needed, as the prescription stated. When tablets went missing from one resident’s blister pack, the resident was not monitored for a reaction and the accident was not reviewed for another month.

Challenging behaviour was not always adequately dealt with. And while the residents were very positive about having the volunteer residents’ children, and one disabled child, among their number, Hiqa was not satisfied that structures were in place to ensure no risk was posed to the children.

There is no excuse for poor practice and it is Hiqa’s job to make sure it doesn’t occur, in its role as executors of the Health Act 2007. They had flagged similar issues before and they could surely have been eliminated.

My problem is this: the Health Act has no subsections which require residential homes for the disabled to be joyful. You could, in fact, be fully compliant with the Health Act 2007 and provide residents with no joy, no spirituality and no contact with nature.

Are we evolving into a society which knows how to regulate but not how to celebrate? Perhaps. There can be no doubt that there is much to celebrate in Camphill, Ballytobin. When I visited a couple of years ago with my son Tom, he played a range of musical instruments in their beautiful, round concert hall.

Hiqa’s inspection report says the residents went on holidays, went horse-riding, played basketball and attended numerous events within the centre and other centres attached to the facility. They attended activities or events alone and with staff. They participated in farm work, worked in the gardens, did weaving, craft making. They had done short courses in art.

Are we really sure that Ballytobin will be better run for its 19 residents when it is managed by the HSE? Like Áras Attracta?

I’m sure there are excellent homes run by the HSE. I’m also sure that there is an obvious clash of cultures between the HSE and Camphill, particularly as over half of Camphill’s 400-odd staff are volunteers. There are 18 Camphill facilities for the disabled dotted around Ireland, from Dingle to Ballybay, from Carrick-on-Suir to Goatstown, from Gorey to Grangemockler. If we lost them it would be devastating, as much for their local communities as for the disabled people they serve.

I call on Minister Simon Harris to sit down with both sides as a matter of urgency and thrash out an accommodation which respects the rules but respects joy even more.


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