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Joint Committee on Health and Children debate -
Thursday, 12 Nov 2015

Challenges facing Camphill Communities of Ireland: Discussion

I ask all those present to switch off their mobile telephones. I welcome the delegation from Camphill Communities of Ireland to the second session and apologise for the delay. The number of votes called in the Chamber this morning suggests parliamentary democracy has gone into overdrive. As members and those watching and listening at home will be aware, Camphill Communities of Ireland provides support services to people with special needs. I welcome from Camphill Communities of Ireland, Ms Miriam Moffitt, Mr. Joe Lynch, Mr. John O'Connor and Ms Anne Finn and thank them for making themselves available for this meeting.

I draw the attention of the witnesses to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to this committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, they are entitled thereafter only to a qualified privilege in respect of their evidence. Witnesses are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable.

I invite Mr. Joe Lynch, national governance co-ordinator of Camphill Communities of Ireland, to make an opening presentation.

Mr. Joe Lynch

I thank members for inviting us before the joint committee. After more than four decades of providing a unique and successful type of support to people with special needs, Camphill Communities of Ireland is facing the real prospect of having to cut its services for the first time. There is even a question mark hanging over the future of the organisation's operations. Camphill Communities of Ireland serves more than 275 people across a range of ages, most of whom are full-time residents in 17 locations. Funding issues with the Health Service Executive, which remain unresolved despite negotiations dating back to 2004, threaten the sustainability of the Camphill model under which the organisation provides secure home environments for residents in its urban, suburban and rural locations nationwide. If these issues are not resolved, there is a real prospect that many of the 275 people served by the organisation will have to transfer to care organisations that are considerably more expensive to the State and do not provide the unique volunteer-based, life-sharing model of Camphill.

Camphill Communities of Ireland is now very frustrated at what it sees as a stonewalling attitude in the HSE towards dealing with this ongoing and protracted situation. At a national level meeting in December of last year between the HSE and a delegation of a number of people from Camphill Communities of Ireland, it was stated bluntly that one community simply could not survive past 2015 without additional funding. To date, very little has changed. In that particular example of an urban Camphill community which supports 20 people with special needs, 16 of those who live there are full-time residents. The recommended funding, according to the HSE's target rates and published in its own value-for-money review of disability services, is in the region of €1.2 million. The funding received is between 49% and 58% of the value-for-money figures. The differences arise depending on whether the recommendations are assessed on an estimation of support need or on staffing levels, each relating to the residents. There is also a variation when a calculation is made, taking into account a contribution from the disability allowance of the residents. In the example community, when compared with the funding provided by the State in 2008 - which more or less met the needs of the operation - there has been the equivalent of between an 8% to 14% cut in funding since 2009. Camphill is not necessarily asking for the full recommended assumed rates according to the HSE's value-for-money report. It would likely be able to sustain the community at a funding level of between 65% to 70% of the target funding levels highlighted in that report.

The Camphill Communities of Ireland operation is a relatively small component of the matrix of service providers for approximately 8,000 people with special needs in residential services in Ireland. Its principles also differ in that the concept is based on the principles of Rudolf Steiner and are underpinned by the acceptance of the spiritual uniqueness of each human being. When the organisation was established in Gorey, County Wexford, in 1972, almost all of its workers were long-term vocational volunteers known as "co-workers". My colleague, Mr. John O'Connor, is seated to my right and is a vocational volunteer co-worker. Such co-workers lived as part of the community and provided 24-7, family-type care for residents. Modest living expenses are shared and many co-workers have raised their own families within these Camphill communities. They have traditionally been helped by short-term co-workers or volunteers such as students from Ireland and abroad who take the equivalent of a gap year to work with the organisation. Small numbers of local volunteers are also involved. In all three elements there is a large component of altruism. The culture and diversity, not to mention friendship and companionship, that co-workers bring to the lives of people with special needs cannot and should not be underestimated. The vocational volunteers provide a vital and fundamental role within Camphill but sadly long-term volunteers are diminishing.

With 505 people now in the total workforce, the organisation has seen a 9% increase in worker numbers in the past two years while funding has decreased significantly over the same period. Within the total, the number of paid employees in the past six years has increased by 25% and between 2009-2013 wage costs for those employees have increased from €2.4 million to €4.2 million which has placed severe pressure on financial resources that are diminishing.

Virtually all of the organisation's income is from the public purse. When the operation was established, it was paid in the form of initial block grants to meet minimum estimated needs, to be topped up if necessary. In the early 1990s the system was changed to a capitation fee basis, which is a more transparent way of funding. Initially, new funding worked out well even though Camphill communities were typically receiving capitation fees of approximately 50% of those paid to other organisations in the same field. The high altruistic nature and element of those who work in Camphill communities means that the wage element of a community can be as low as 45% of total costs when compared with a typical 80% in more mainstream organisations. It is accepted that the savings to the State from the activities of Camphill communities are currently in the region of €5 million annually.

At present there are 274 co-workers. The number of co-workers has remained fairly constant though the proportion of short-term volunteers is rising. This is partly because it has become more difficult to attract long-term co-workers to the Camphill lifestyle. The situation is exacerbated by the increasing number of long-term co-workers now reaching retirement age for whom a small top-up provision to their State pension has also to be made. On the other hand, the numbers of fully paid employees in the communities has risen steadily. The declining number of long-term co-workers is part of the reason employees will only work more conventional hours compared with the 24-7 input of co-workers.

Camphill welcomes the efforts to improve the quality of residential care and actively engaged with HIQA throughout the inspection and registration processes which, although challenging, has been a positive experience. In fact, a HIQA inspector commented off the record that if they had a child with an intellectual disability that they would choose Camphill as the preferred model of service. However, Camphill is also meeting greater financial pressures as the regulatory process for residential disability services requires a substantial amount of administrative work, as well as more stringent fire and other safety and infrastructure changes. A significant element of its residential accommodation is now 30 years old or more, which brings extra financial burdens. All of this has also meant that long-term co-workers are increasingly pulled into administrative tasks rather than the life-sharing ethos of the Camphill ideal. In order to address this issue, Camphill has had to support these roles through employment which has led to increased costs.

When the HSE conducted a value for money pilot study, it invited Camphill to participate so that it could address the funding issues. The study found very large discrepancies between the costs involved in the various agencies. Camphill was very much at the bottom end of the list on a cost per resident basis, so much so that it was in part nearly considered an outlier in statistical terms. The pilot has subsequently been rolled into a report on value for money and policy review for disability services. This report came up with a programme to achieve a 5% reduction in annual funding per placement from the 2009 level. Instead of the value-for-money review being used to address the huge discrepancies in the system, Camphill's funding was targeted to achieve the same cost savings as everyone else without the increases in funding that larger service providers had been granted in the Celtic tiger years.

Following many meetings with the HSE, at both local and national level, the delegates of Camphill say that they now feel absolutely frustrated at being ping-ponged from one level of the HSE to another with no movement on the funding issues. Camphill has been informed that the HSE may at some point in the future develop a needs assessment tool to work out the support needs of individual residents. Camphill supports the move as it would bring equity into what is a very skewed system at some unspecified point in the future.

Camphill says it has simply been blocked at almost every turn and, most recently, by the suggestion that a service improvement team led by the HSE, that would consist of individuals seconded from larger service providers, would inspect the way Camphill delivers its services with a view to highlighting how further cost savings could be achieved. Some co-workers have reached the conclusion that they must simply walk away from their vocation. If that happens, the resultant costs per resident will inevitably balloon compared with the very low cost of the Camphill model, even in a modern context of some employed supports. These are swollen costs that the Irish taxpayer will have to pick up. Such a scenario would be detrimental to the individual residents who consider their current Camphill placements home. Equally, the 17 urban, suburban and rural locations in which Camphill operates would also lose out because, in each case, residents and co-workers have integrated into their local towns and villages. Camphill's ethos has invariably resulted in extensive mutual support in those locations and communities have adopted the residents. This is integration in a very real and progressive way that clearly belies the tokenism of some institutional models.

In the face of the current programme of avoidance, Camphill has been forced to undertake a political lobbying exercise to try and bring some pressure to bear on the situation and to break an 11-year logjam. If lobbying does not succeed then a major shift looks inevitable. Such a shift would mean increased costs for the taxpayer and an undeserved end to four decades of hard work, goodwill and obvious achievements by thousands of voluntary co-workers who are sharing, and have shared, their lives with people with intellectual disabilities. Worst of all, however, is the fact that 275 people who have lived much more successfully than they or their families could ever have expected will face an unknown future and be wrenched from the love and care they have today. Camphill seeks real engagement with the HSE to redress the appallingly low capitation fees that have persisted at Camphill over the past two decades. In fiscal terms three of our communities are close to the edge and soon they will have to commence arrangements to transfer residents to the care of the HSE if a solution is not found in the very short term.

In addition, the rigours of the new regime imposed by the national standards for residential disability services need to be addressed in a very concrete way. Simply ignoring the problem will not aid the safe care of people with special needs. The HSE asked for costings for fire upgrades and other works. The costings were supplied more than 12 months ago.

To date, HIQA has inspected all but two of Camphill's communities. The issues identified require substantial funding to meet the requirements of the inspections. To date, no funding has become available. Ongoing maintenance of a huge raft of buildings is not currently included in any funding stream from the HSE. This also does not take account of the financial cost of purchases of new vehicles. A funding mechanism must be found to ensure safe homes and safe vehicles for the people we care for.

I thank Mr. Lynch for his presentation. It is disappointing that the presentation shows there is an issue with the HSE. Is it Mr. Pat Healy in the HSE that Camphill deals with?

Mr. Joe Lynch

It is Marian Meany and Pat Healy, yes.

Has there been dialogue with them before the meeting today?

Mr. Joe Lynch

We started a dialogue with the HSE in 2004 and with Pat Healy-----

I mean in recent times.

Mr. Joe Lynch

We had our last meeting with Marian Meany in February 2015.

Was that the last contact the witnesses had with the HSE?

Mr. Joe Lynch

In fairness, we have had contact with the HSE at local level, but we had talks with the HSE in December 2014 and February 2015 and have not had another meeting since then.

The reason I ask the question is that I was looking forward to hearing about the successful work that Camphill Communities of Ireland does rather than putting Mr. Lynch in the unfortunate position of having to come to the committee and base most of his presentation on a lack of dialogue and action by the HSE. That is disappointing. I have tremendous time for the work of Camphill Communities of Ireland and what it achieves. From talking to people who use the service, I know it is fantastic. I was hoping that this morning we could shine a light on the great work of Camphill Communities of Ireland. In fact, I hope we can do that during the question and answer session. However, it is why I am disappointed about the presentation. I am annoyed at the fact that there has not been contact with the HSE. I do not want to pre-empt the discussion, but I hope members will agree to write formally to the HSE after the meeting. I am disappointed from the perspective of Camphill Communities of Ireland because I was hoping we would have an opportunity for the organisation to tell the world listening and watching about the great work it is doing rather than having to come here and, as it is perfectly entitled to do, give a presentation on the issue with the HSE. It is disappointing because Camphill Communities of Ireland does great work.

To inject a little more balance, I reflect on my own personal exposure to the work of the Camphill community at the Ballybay location in my constituency and home county. I have had the opportunity to engage with Mr. Joe Lynch previously, including at Ballybay, and I know personally and from my own attendance on a number of occasions at the special days that it is a fantastic facility. I pay tribute to all who give service there and throughout the Camphill communities throughout the country. I have met people whose commitment is a vocational one. I hope Mr. John O'Connor will accept that I see it in those terms and the role as a vocation. There is no other way to describe what is involved and the people I have met tick that box in the most honourable and finest understanding of that idea of vocation. That said, I am sure the situation in Ballybay is replicated throughout all of the Camphill communities and it would be unforgivable if our health system failed to the point that any of these communities were lost.

In his presentation, Mr. Lynch talked about a funding issue with the HSE which has remained unresolved and now threatens the sustainability of the Camphill model. There can be no doubt that if the situation is as bad as that sentence suggests, it is unacceptable. It is not only in terms of the actual prospective loss of any entity within the Camphill communities network; the fact that the threat even exists is unacceptable. I note that Camphill has been told by the HSE that it may at some point in the future develop a needs assessment tool. I do not for a moment believe that is Mr. Lynch's language. The HSE has a great deal to clarify. What does it mean by "may at some point in the future"? It is either going to do it or it is not. It is something that would be more than useful, and I note that Camphill would support that approach. That is one of the questions. I want to record support for, and to second if necessary, the Chairman's proposal that we write directly to the HSE on the back of this engagement. That is one of the questions that should be incorporated in the list of questions that we need to put.

I appreciate what Deputy Ó Caoláin is saying. So that members are aware, we got a briefing note from the HSE prior to today's meeting. The Deputy probably saw that. I am glad the Deputy agrees with me.

I have chosen to highlight a number of the points Mr. Lynch made in his presentation. He said that individual residents consider Camphill home. There can be no question about that. Among those whom I have met, there is no doubt of that. We are talking about the homes of people with special needs. What that would mean in terms of the individual human beings is inconceivable. We talk about homes and housing in the Houses of the Oireachtas, particularly of late, across a whole range of different situations that have presented. This is just another of those, and these are the homes of people under threat. The alternative is that the HSE would have to take responsibility for the provision of the care settings for the 225 current residents, if I have the number correct. The HSE needs to wake up to what is involved here.

Mr. Joe Lynch has imparted so much information in what he has said. The questions from me are not really back to the panel; they are for the HSE at this point. That said, there are just some points I would like to tease out. Camphill Communities of Ireland was getting capitation fees of approximately 50% of those paid to other organisations in the same field. Would Mr. Lynch like to expand on that? Why has that been the case? What explanation does Mr. Lynch think there is for why Camphill would be treated differently to other organisations providing services in the same field?

To date, HIQA has inspected all of the sites except two. The issues identified required substantial funding. That is the case as the HIQA inspections have been done and the recommendations are there in terms of care settings for older people. This has required significant investment. Dormitory-style provision is no longer acceptable. At best, one might have a twin-room facility. Most often, people should have their own individual space and all the ancillary services. An effort is being made, albeit not a mighty one, to meet those recommendations in a number of other care settings. To date, however, no funding has become available. HIQA is not out there doing its work just to tick the box. If there are recommendations in relation to specific works that need to be carried out to modernise and upgrade facilities, that is no less the entitlement of the residents in the Camphill Community of Ireland facility. However, the responsibility for funding the works must rest with the Health Service Executive.

That is a very important issue, as the HSE cannot ignore recommendations from HIQA. One of the faults in the system is that HIQA does not have the wherewithal to enforce implementation of its recommendations, and Camphill certainly cannot undertake the financial outlay for capital works. It is just not within its gift, and it is the HSE's responsibility. That is another point that needs to be strongly reflected in the communication that I hope we all agree needs to issue from this meeting. I thank Mr. Lynch and his colleagues once again and I wish Camphill every success in its continued service to a very deserving cohort of citizens.

I welcome the Camphill representatives here this morning, thank them and acknowledge the excellent work Camphill does in the 17 centres around the country for 275 residents. I know it does absolutely excellent work in the two centres in south Tipperary, in Carrick-on-Suir and Grangemockler, and I have family connections with some individuals who have availed of Camphill services over the years and found them to be very impressive.

I agree that we should write immediately to the HSE and the Minister, but we should go further and advise both that this issue will be on the agenda of this committee for our next meeting with the Minister and the HSE, which will be held reasonably shortly. This is an urgent issue and I am disappointed that nothing has happened. As Mr. Lynch has said, this has been going on since 2004. Last year, following the presentation given by the witnesses in the AV room, which I attended as did most members here, we made representations to the Minister and the HSE. I hoped there would have been movement on proper funding for Camphill as a result, but disappointment has been felt - both by the representatives of Camphill and by the committee members - that this has not come about. It is difficult to understand the reason. As Mr. Lynch has indicated, Camphill is providing services at approximately 50% the rate of other providers; it is at a discount to the State. If the Camphill centres were to close, the additional cost falling on the HSE and therefore on the State would be significant. That cannot be allowed to happen and I know members will do their utmost to ensure nothing like that happens and that instead there can be real engagement between the HSE, Camphill and the Department, if necessary, to ensure reasonable funding levels are made available.

There are key questions arising from HIQA reports, including the upgrading and maintenance of buildings, the question of new vehicles and funding for the workforce. We have heard about the co-worker element, which is an integral part of the Camphill process. There are probably not as many co-workers or volunteers nowadays as there have been in the past, but we cannot have a position in which the sword of Damocles is hovering over Camphill.

I have a general question for Mr. Lynch. I cannot think why the Camphill communities would be treated in this fashion, but is there any indication of the thinking behind the lack of funding for and engagement with Camphill by the HSE? I support the case made by Camphill and the Chairman for taking up the matter with the HSE and the Minister. I hope we can do this in time for our next meeting with them.

I thank the delegation for their presentation. I seek clarification on a few issues as I am trying to get a clear picture of the HSE's involvement. Please do not take this the wrong way, but I need clarification. It was indicated that the number of employees is approximately 500, but I presume not all of these work on a full-time basis. I have done a quick calculation on the money being expended, and all of those people could not work full-time. It was indicated that the number of staff had increased, but will the witness tell us why that happened and the reason the cost factor seems to have increased? There is obviously an explanation for that.

It appears from the figures presented that costs are way under what they would be if this was a HSE-run facility, so will the witness expand a little on the differences between them, as they could be very relevant? The witness spoke about capital costs for the facilities. Have we any idea, if we were to upgrade the facilities, what the total cost would be? Perhaps we could get an example of one or two facilities, as the costs for all of them are probably not to hand. With regard to long-term planning, do the witnesses see additional increased costs occurring on a year-to-year basis from now on? It was mentioned that costs have risen from €2.4 million to €4.2 million, which is a substantial increase. Is that rate of increase likely to continue or will it level off? The witness indicated that wage costs are only approximately 50% of the overall cost, but in a similar HSE facility wage costs would be approximately 80% of total cost, so could he expand on that as well?

This information would be very useful. The HSE might tell us it is not engaging for reason A, B or C, but that does not seem logical if Camphill is providing a service at a far lower cost base than an equivalent HSE service. Will the witness expand on that so we can have some answers when the HSE responds? It might argue that the cost is too great, which does not seem to be the case. I thank the delegation for the presentation and the work being done by Camphill. All of the people involved are very committed to it, so it is important that it gets the support it requires.

I thank the delegation for its presentation and I am very aware of the organisation, as a friend has been closely involved with the Carlow-Kilkenny Camphill organisation. I also have constituents who are involved with the Camphill in Hollywood, County Down. I thank the organisation for its work, although these may seem like empty words on this side, as empty words will not pay Camphill's bills.

I have examined the numbers supplied by the HSE. Taking the number of residents and dividing it into the €12 million contributed by the public purse, it amounts to approximately €60,000 per person, and that excludes day patients and others from consideration. We incarcerate people in prison, and I hear it costs multiples of that money to keep people in prisons.

It goes to show where the focus is in Ireland that people with disabilities and mental health issues are always at the end of the queue. We do our best here. Reference was made to a pilot value for money study. Perhaps the witnesses would comment on the value for money per patient at Camphill versus other agencies. I am aware that there are different types of disability and, therefore, different types of supports required but perhaps the witnesses would outline for the committee how the Camphill Communities of Ireland approaches service provision and the cost per patient in that regard.

Deputy Mary Mitchell O'Connor took the Chair.

Mr. Joe Lynch

I will respond to some of the questions and will then ask my colleagues to respond to others. Working backwards, we were omitted from the value for money study because we were considered an outlier. In terms of statistics, capitation fees in respect of the provision of residential care, which is provided on a 24 hours a day, seven days a week and 52 weeks of the year basis, for 9.4% of our residents is between €20,000 to €30,000 per annum. Capitation fees in respect of 41.9% of residents, which is the largest cohort, are between €30,000 to €40,000 per annum, and for a further 16.7%, fees are between €41,000 to €50,000 per annum. The remainder are above that but they would have serious complex needs. Capitation fees in respect of more than 50% of people within Camphill are less than €40,000 per annum. In terms of the eight agencies reviewed in the context of the value for money study, we would be at the bottom end of the scale compared to all of those agencies.

What are the capitation fees for a comparable agency in the public service?

Mr. Joe Lynch

They would be at least double those for Camphill. While needs assessments are carried out in respect of people at the top end of the scale who have very complex needs, such that the correct fees are applied to them, this does not happen in relation to people on the bottom of the scale. Camphill has to hold up its hands in that at the time it was seeking capitation fees, it sought only what it needed at that time rather than what was required in relation to the top end of the scale. Strategically that was a bad move.

So, when there was a reduction the agency was hit twice as hard.

Mr. Joe Lynch

Yes. We were hit twice. I will try to put that in context. Capitation fees are paid by the HSE on a monthly basis to each of the communities. On top of that, Camphill receives a top-up payment in recognition by the HSE that Camphill was not properly funded. The top-up fee in 2008 was €2.5 million. In 2009, it was €1.9 million. It then dropped to €900,000 in 2010 and it dropped further in 2011 to €525,000. While other organisations have been hit by cuts of 2%, 3% and 1.5%, Camphill has had its top-up payment reduced from €2.5 million to €500,000 per annum and has also been hit by the 1.5% to 3% cuts across the board, which seriously impacts our ability to provide services going forward.

Deputy Ó Caoláin mentioned the HIQA recommendations. HIQA can order that an agency acquire more staff, upgrade its bannisters, fire services and so on, which must be completed within a specific timeframe. There was a bit of a fudge in this regard between last year and this year. Obviously, people within the HSE must have had the conversation with HIQA in relation to funding for these upgrades, such that fire service upgrades were not deemed an essential part of the registration process. While these services must be upgraded, there was a willingness to allow them to be placed on the back burner because of the amount of money involved. In regard to Deputy Mary Mitchell O'Connor's question in this regard, we need north of €2 million in relation to fire upgrades and so on.

The second recommendation provides that HIQA be permitted to issue an immediate action notice such that agencies will have no choice but to do whatever it says. An agency would generally have 24 to 72 hours to complete the necessary work. Immediate action notices would be served in situations of potential danger to persons. One would have no choice but to find the money to do that work or one could be deregistered or face a fine in court. I will ask Ms Moffitt to elaborate further on fees within Camphill.

Deputy Jerry Buttimer resumed the Chair.

Ms Miriam Moffitt

My daughter has been in Camphill for the past 16 to 18 years. She is 33 years old and has considerable intellectual disabilities, on top of which she is blind. She receives 24 hour care in Camphill. My totally blind, mentally handicapped daughter receives total care in Camphill at a cost of €33,000 per annum. One would not get bed and breakfast accommodation for that amount.

Does Ms Moffitt pay that fee?

Ms Miriam Moffitt

No. The fee is paid by the HSE. The cost of care for my daughter, who has extremely complex physical and intellectual needs, is €33,000 per annum. My daughter is not unique in this regard. In the community she is in, there are 24 people. The fee in respect of 18 of those 24 people is €38,000 per annum or less. There are 15 people in respect of whom the cost of care on an annual basis is €33,000. This cannot continue. It has been maintained up until now through our reserves. Two years ago, we had a nest egg of over €250,000. That is gone. We do not know how we are going to pay wages into the future. Peter and Paul are well robbed at this stage.

The HSE in its briefing to the committee said that Camphill has a €4.2 million cash balance.

Ms Miriam Moffitt

In reserves, we have €4.2 million. I have run a business for years. It is good business practice to keep reserves of two to three months. The figure provided by the HSE relates to our reserves. A huge amount of that money has been spent on upgrades ordered by HIQA. The figure which the Chairman has given is no longer relevant in that it has reduced significantly because we have been paying wages out of our reserves. We will not be able to do that for much longer. Camphill is operating on heritage funding. For people like my daughter, whose name is Karen, funding has not been increased. There are people who have been in Camphill for the past 20 to 30 years. People with intellectual disabilities often progress into dementia and Alzheimer's much earlier than mainstream people such that we have people whose needs have increased but in respect of whom funding, because they have been in the facility long-term, is very low. Our people with the highest needs who are longest in the facility are costing a fortune in terms of delivery of care. We are not getting anywhere near the amount of funding required in this regard. At this point in time, we have to consider whether we can offer a safe service and a safe environment for these people. The answer is that we are nearing the end of our capability in that regard.

In regard to whether the sword of Damocles is hanging over us, it is dangling by a very fragile thread. We were able to keep the show on the road but our reserves have been depleted owing to our having to fund wages, upgrade services and meet the increased needs of our residents from those reserves.

People with Down's syndrome begin to suffer from dementia as they head into their 50s, which is 20 years earlier than other people. Camphill has been in Ireland approximately 30 years. We have a serious cohort of people who are heading in that direction. It cannot go on.

Mr. John O'Connor

I would like to pick up on a few points. The question on assessments is a very important one because it is one of the things at the heart of the problem. It is also part of the solution to the problem. I was involved in Camphill in Northern Ireland for a number of years. We had a similar situation in the late 1980s and early 1990s. We dealt with the situation by finding a good robust assessment framework which we rolled out in the communities. An objective figure for individuals was found and their needs were able to be met on foot of those figures. We have been using the supports intensity scale assessment, which was introduced by the HSE in Kilkenny and is an effective assessment framework. It works quite well and can be verified externally by a clinical psychologist. It is a good mechanism for identifying the true costs of an individual's support needs.

There is no perfect assessment framework. Every body or group requires a different type of assessment framework, but this one works well for us. It is recognised nationally and can arrive at a very objective figure for support needs which can be verified. It is an available solution and one that we have been using. We have made some inroads in certain areas using it. In other HSE areas, it has been more difficult to make inroads using it. It is one thing that would be very good as part of the mechanism for addressing these problems. The assessment is there and we are very open to working with the HSE on it.

The other problem we have at the moment is that the face of social care has changed dramatically in the past seven to ten years. We have been working with what we in Camphill call a life-sharing model. We have vocational co-workers. Deputy Ó Caoláin referred to them, as did Deputy O'Connor and Deputy Healy. They have experienced that model through visiting the communities. It has worked very well and has served Camphill across the world, and in Ireland since the early 1970s, very well. However, the model is now changing for a number of reasons. The number of long-term co-workers is decreasing. Every year we have fewer long-term co-workers. When a long-term co-worker is living in a community it means there is not a complete shift system in place. There is an extended family situation in the residential setting. This works very well as there is continuity of relationships and familiarity grows over years. It is the closest thing to a home environment. This is changing because of the change to the face of social care and the pressures placed on the co-worker cohort over recent years. People are being asked to work an extraordinary amount of hours every week, which is not sustainable. People get burnt out. They realise it is not sustainable and that they cannot continue. These issues are eroding the co-worker cohort, which has been at the heart of Camphill. If we could do something in the very short term we would have some chance of addressing some of those issues, but the longer it continues the more people say this is something they cannot sign up to any longer.

Co-workers who are involved in Camphill are involved because they are interested in social care, but they also recognise that there is a richness of life available to those living in a Camphill community. It is a residential setting, but it is a home and not an institution. Anyone who visits a Camphill community recognises quickly that it is based on healthy relationships and recognising the humanity of the people who are living there. A culture develops and this is recognised by families. Families appreciate the culture and individuals who come to Camphill feel recognised and appreciated. Local HSE staff and administrators, social workers and liaison nurses notice the benefits of sending someone to Camphill. It ticks a lot of boxes.

It was mentioned earlier on that two or three of the communities are in serious jeopardy. If something is not done in the short term, we will see serious crisis situations in these communities. They are at crisis point already but they will be in serious crisis situations when the question of closure arises. It would make a huge difference if we could get an assessment mechanism in place and some kind of funding mechanism established that would address short-term issues in under funding. Even hearing that it was in the pipeline would make a huge difference to morale in the communities.

We welcome HIQA's involvement in Camphill and that of other agencies, and we feel it is a positive thing. There is an increased amount of work and increased costs associated with this involvement but the standard of accommodation in Camphill is well above average. However, we are now required to meet nursing home standards on fire safety in what was a home environment. This sort of thing drives up costs. When a facility is underfunded, items such as maintenance are left on the long finger because we do not want to affect care. Care is the primary concern. We not want to erode the quality of care, so maintenance issues are left unattended. This includes vehicles. It can be sustained for a certain amount of time but after three to five years - this has been going on since 2007 - we get to the point where it becomes unsafe. This is one of the core problems at the heart of the issue.

Mr. Joe Lynch

There are a couple of things that would be good to say for the record. The rates of pay within Camphill are far lower than the industry norm in the community and voluntary sector, particularly in this area.

Who sets the pay rate?

Mr. Joe Lynch

We do. We set it ourselves and we advertise it. We do not link ourselves to HSE pay rates or models. For example, on average a personal care assistant will get €14.21 per hour. It is hardly a fortune. It is quite a poor rate, but most of our people would not leave because of the money. They like working in Camphill and with our residents and day attendees. We have stated on the record of the Committee of Public Accounts that nobody in Camphill is on the HSE level 8 salary scale, which is €64,000 a year, or above. We have nobody on €64,000 a year in Camphill. The national governance co-ordinator role and a role such as mine in any other organisation would certainly attract higher pay. I am quite happy to work in Camphill at the rate of pay I am receiving because I love the organisation. It does good work and it is work worth doing. Camphill does not have high rates of pay.

I have an information pack for everyone-----

On that point, in his presentation Mr. Lynch said there has been a 9% increase in worker numbers in the past two years. Was approval necessary from the HSE to employ those people?

Mr. Joe Lynch

No. The HSE gives us a packet of money and we have to operate the service within that packet. Unfortunately we are caught between a rock and a hard place. The HSE gives us an amount of money and states that we must operate within that amount but HIQA requires us to have a certain ratio of staff to residents and so on. Therein lies the problem. We need to hire staff because we need to operate a safe service but the HSE says it will not give us any more money.

Deputy Mitchell O'Connor asked what the thinking behind that would have been.

My apologies, but Deputy Mitchell O'Connor has to speak in the Dáil.

Mr. Joe Lynch

The only thing I can come up with to explain why there has been no engagement with us is that they feel Camphill is a low-cost operation and should be kept that way. We have a very low-cost model and we intend to keep it that way - we do not intend to run away with ourselves. This year alone we have spent €787,000 of our reserve on infrastructural and fire issues within Camphill. The reserve the HSE mentioned as being over €4 million is now certainly below €2 million. That puts us in danger with the charities regulator because the Charities Regulatory Authority tells us we should have between three months' and six months' running costs in the bank and that would bring the figure up to €6 million. We are caught between a rock and a hard place in that respect.

One of the three communities will run out of cash in the next four to six weeks. We do not have any more money and there is no more money from within Camphill to spread around to all areas. We have already had a cash injection of some €30,000 from central funds but these are down to €88,000 in total so there is no more money to give. The community in question will run into the sand in the next few weeks. We are not sitting on our hands and we have done some fundraising. We applied, using the Camphill banner, for an overdraft facility from the Bank of Ireland and the response from the bank was that it would not approve permanent overdrafts for HSE-funded bodies so there is no money there either. We do not have many options other than to issue protective notices to our staff and ask the HSE to come and collect the 25 people.

Have you done that?

Mr. Joe Lynch

We have not done it yet because we were hoping the HSE would engage with us. We had a meeting with the local HSE yesterday morning and it is saying pretty much what the banks are saying. It comes back to Deputy Mitchell O'Connor's point. At local level the HSE says exactly what a bank says, namely, that it is a business case and will have to go to the unit in Dublin. The unit in Dublin then says it cannot give us the money. Therein lies the crux of the matter.

Mr. Lynch said €33,000 was coming in for individual residents. Is it correct to say the residents are contributing themselves? It is important people do not get the impression they are not contributing. If they get a benefit, then Camphill gets part of that.

Ms Miriam Moffitt

Yes, 50% of the disability allowance, DA, is contributed by the residents, which amounts to €90 per week, which is €4,500 per year. The €33,000 we get from the HSE in my daughter's case is supplemented by another €4,500 from her own DA, which is her property. She holds onto the remainder of the DA for dentists, etc. Effectively, the figure is €37,000 when one puts the two together.

I have a problem dealing with an estate where a trust is in place for a resident. If there is a trust with a resident in it and the trust wants to provide money to buy, for example, a vehicle, we are now advised that, because other people in the facility get the benefit of that vehicle, Camphill cannot accept the funding. This has arrived on my desk recently and I have raised it with the Minister in the Seanad in connection with the Bill which is being considered there. We need clarification on this point because many organisations such as Camphill have a problem with residents whose parents have died and left funding for them in a trust but the money is left sitting in that trust. Has Ms Moffitt come across this problem?

Ms Miriam Moffitt

I will let Mr. Lynch handle this question.

Mr. Joe Lynch

This concerns a donors' charter, which Camphill Communities of Ireland has. I am not sure whether the trust is bound by legal responsibilities but if a donation is made to a charity for a specific purpose then it has to be used for that purpose. If they donate to buy a vehicle for Camphill Communities of Ireland that is not an issue but if they donate a vehicle for Colm Burke in Camphill Communities, and only Colm Burke can use it, that is ring-fenced. One can, however, make donations and we have received donations from families and friends who have given €50 or €100 to Camphill for any purpose, including paying wages. If it is for a specific purpose, however, it may only be used for that purpose.

That is where the problem arises in my case. The funding is in a trust for a particular person but if we give it to an organisation such as Camphill it cannot buy a vehicle for that one person. The family want it to be done but is being told it cannot do it.

Did Mr. O'Connor indicate that there was a needs assessment model in place in some areas but not in this jurisdiction? If there is one here, what is its status? He confirmed there was a needs assessment framework in the North. Is it a template we could replicate here? Is it transferable and could it apply here? Would the respective HSE decision makers be familiar with the detail of the approach?

Mr. John O'Connor

The HSE in Kilkenny identified a problem with assessment as regards school leavers approximately ten years ago. It invited a group from America to organise training for a number of senior agency people. They rolled out that training - it is known as "supports intensity scale assessment". It can be linked to value for money and is a very comprehensive assessment framework. We have used it in a number of communities as it gives a very accurate picture of the support scales people need and is an effective way of coming to a figure which can be verified externally if people need it to be, by means of inviting a clinical psychologist to come in and look over the figures. We have done that in a number of situations and the clinical psychologist has often rated the costs higher than the supports intensity scale. It is accurate but we have used it in a way that brings in a realistic fee for people while covering all their support needs. We have recently developed an internal comprehensive assessment tool and we are rolling it out in a number of communities. There are numerous assessment possibilities which could be adopted.

How far has Camphill progressed in its engagement with the HSE regarding the remodelling of services?

Mr. Joe Lynch

Our last engagement was in February this year. There was an engagement in August, at which Ms Moffitt was present, on the development of a strategic plan but we have not engaged with the HSE on looking through the model as it has not yet come back to us.

I apologise for not being here earlier but I was at an earlier meeting. I managed to catch bits of the presentation. I have read the statement and one thing jumped off the page, namely, the life-sharing ethos. I know that means a lot to Camphill and it means a lot to us too.

Many groups have taken on the challenges in regard to people with intellectual disabilities, long before the health services have done so. Groups like Camphill Communities of Ireland have been working in every little town here.

Sadly, as the report presented here states, volunteerism is diminishing. While it is not diminishing in every area, the problem is significant in high dependency areas like Camphill's, where people face challenging issues. Also, because of all the rules and regulations that have been introduced for those working with people, volunteers do not find it as easy to volunteer as they did in the past. This probably adds to the decrease in the numbers of volunteers.

I wish to thank Camphill Communities of Ireland. I have visited a number of groups around the country that, like Camphill communities, have a spiritual ethos about them also. This ethos is very much part of how we look at our lives and at individuals who have learning difficulties or mental illness. I thank Camphill communities for what they do in that regard. The Chairman spoke about funding and I will discuss that with him after this meeting. Again, I apologise for coming late to this meeting, but I was otherwise delayed.

Mr. Joe Lynch

We thank the committee for the opportunity to make this presentation today. The life-sharing model is diminishing a little, but we have quite a lot of short-term volunteers. We do not have a problem getting short-term volunteers, who come from all over the world to assist and befriend people here with special needs. They are fantastic and we could not do our work without them.

Sorry, but I wish to allow Deputy Healy contribute.

Mr. Lynch said that one of the Camphill centres is facing closure within three to four weeks. Has the organisation met the HSE on the issue and is it aware of the position?

Mr. Joe Lynch

We met a senior official of the HSE in regard to the local funding yesterday morning. To be honest, we have a fantastic working relationship with most of these people, but the situation was very difficult because, unfortunately, she was looking across the table at me telling me she does not have any more money for us and would have to kick the can up the road to the business unit in Dublin. We have been hearing that same response for many years and the business unit in Dublin seems to be very deaf to anything to do with Camphill and funding arrangements.

On that particular point, has Mr. Lynch engaged with the director of services in charge of this area?

Mr. Joe Lynch

That is to be our next telephone call today. Yesterday we engaged at local level because we feel we should not go over the local person's head if that can be avoided. We will engage directly now.

My concern is the threat, in terms of the potential closure of the service, which will deprive families like Miriam's. This puts them in a precarious and vulnerable position as they cannot access a service. Is the HSE, at the higher level, aware of the implications of not engaging or of the likelihood that Camphill will not be able to provide a service?

Mr. Joe Lynch

I can only say that yesterday morning when we talked with the senior member in the area, she said she would contact Marion Meany, the second in command to Pat Healy. I can only assume she has done that. At our end, we will do that today, but we wanted to meet with this committee first.

Okay. I would like to thank Ms Moffitt, Mr. Lynch, Mr. O'Connor and Ms Finn for being with us today. I am conscious Ms Finn did not get the opportunity to contribute. Does she wish to say anything now?

Ms Anne Finn

No, thank you.

I thank all our guests for attending. Following our meeting, we will reflect upon the testimony and will communicate with the HSE immediately outlining the points we have discussed regarding the issues for Camphill.

Will the secretariat circulate a copy of our letter to members?

Okay. I thank members for their patience. We stand adjourned.

The joint committee adjourned at 1.10 p.m. until 9.30 a.m. on Thursday, 19 November 2015.
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