Seanad debates

Thursday, 4 October 2012

Adjournment Matters

Respite Care Services

3:40 pm

Photo of Susan O'KeeffeSusan O'Keeffe (Labour)
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I welcome the Minister of State at the Department of Health, Deputy Alex White, on his first time in the Seanad as a Minister of State.

Photo of John WhelanJohn Whelan (Labour)
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I have the privilege of welcoming the new Minister of State at the Department of Health to the House for the first time in that capacity. I wish him well in his endeavours. He is singularly fit and capable of carrying out his duties and responsibilities.

In the 18 months I have been in the Seanad I have not raised a matter that concerns me as much as this matter before the House. It concerns some of the most vulnerable people in our community, namely, Down's syndrome children and adults. The issue is the arbitrary and unilateral closure and withdrawal of residential respite care for Down's syndrome children and young adults in Mountrath and Abbeyleix in County Laois without anything that comes close to meaningful consultation with the clients or their families. This action has been undertaken by the Muiríosa Foundation based on cutbacks which are not only unjust but grossly misguided. They are morally irresponsible, medically unsound and there is no monetary value or savings associated with them. To date, the Muiríosa Foundation has not been able to indicate what savings will accrue. The move amounts to changing tack and policy. I see it as a farming out of services by the HSE and the Department of Health to what is essentially a private service provider. It is a move towards an American model of service delivery. This would not have occurred under the remit of the Sisters of Charity of Jesus and Mary in Moore Abbey, which operated these services before the establishment of the Muiríosa Foundation.

Last Saturday week I attended a rally in Abbeyleix. One would have to have a heart of stone not to be moved and persuaded by the testimonies of the families affected. Fortunately, our society has moved on but in the past, these children and people with intellectual disabilities were hidden behind high walls. Our society and community have moved on from that and now these people are being cared for in their homes and communities where they belong.

As a result of this process there are many instances of elderly parents or parents of advancing years who are trying to cater for and cope with adults with the mind of a child. There are adults ranging from 35 to 55 years of age who have the mental capacity of a young child. One parent approached me whose 35 year old son is in nappies 24 hours a day, seven days a week. This is the level of need and care these people require.

These families are not looking for much from the State. They are not looking for handouts but merely for some cover or respite one weekend in six, not only for the children and young adults who have autism or Down's syndrome, but for themselves in order that they can recuperate and recover to face the challenges that come with catering for and coping with these challenging behaviours. No one wants to abdicate responsibility. I implore the Minister of State through his good offices and his sense of decency and concern to intervene in this regard.

The agency concerned receives a significant sum, amounting to ¤40 million, from the HSE to provide services. I realise it has a range of services to provide. However, I would like to think that somewhere within the service level agreement there is a stipulation that it is not possible for the organisation to walk off the pitch without any consultation or concern for these families or to decide to withdraw services in Abbeyleix and Mountrath. This decision is impacting harshly and with distressing outcomes on 90 families.

Photo of Alex WhiteAlex White (Dublin South, Labour)
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I thank the Chairman and the Senator for their kind words of welcome. It is a pleasure to be back in this Chamber, albeit in a different capacity. I look forward to a fruitful relationship with colleagues here in the months and years ahead.

I thank the Senator for raising the matter, which I am addressing on behalf of my colleague, the Minister of State, Deputy Kathleen Lynch, who, as the Senator is aware, has responsibility for this area. A broad range of needs are covered under the heading of respite. For some families, it provides a space away from the continuing and cumulative strain of supporting and caring for someone with significant and complex needs. In other situations, respite enables the child or adult to spend time with friends in ordinary community settings, for example, going for a meal or to the cinema. For other families, respite ensures that a reliable arrangement is in place if they have a family or work commitment that may take them away from the family home for a given period.

The Minister of State, Deputy Lynch, and I are very much aware that respite services form a vital part of the continuum of services for families and help to preserve the family unit and support family stability. We are also aware of the impact the absence of respite service provision can have on other services. However, the health service as a whole must operate within the parameters of funding available to it. Given the current economic environment this is a challenge for all stakeholders, including the HSE, voluntary service providers, services users and their families. If respite services were to be exempt from cost-recovery measures, day services and residential services would have to bear the full burden of the necessary adjustments.

The Senator raised a specific issue relating to the Muiríosa Foundation and Laois Respite Services. The Muiríosa Foundation, like other service providers, is addressing the increased demand on its services within a more restricted budget. The standard response that has evolved in the area of respite is for a professionally staffed, centre-based respite facility to offer an overnight arrangement. Unfortunately, there are significant costs associated with this approach. The current situation in County Laois is that the house at Fountain View, Abbeyleix, which had been providing adult respite during the past decade, has formally ceased offering respite support. However, the house has not been closed. A residential service will continue to be provided at Fountain View but the implications may vary from family to family as a consequence. Some families will retain their current level of access to centre-based respite. Others may secure an increase or decrease in this type of respite, depending on what is appropriate in individual cases. Other families may be directed towards share-a-break options, which are suitable in the case of some individual service users.

I understand that individual families are being briefed on the rationale behind the current changes and the implications for their family member. The HSE has informed the Minister that the Muiríosa Foundation has its full support for the proposed changes, which are aimed at providing the best mix of respite services in County Laois generally. I urge all involved to work together to achieve the most appropriate outcome for each individual involved, having regard to the optimum mix of services that can be provided within the resources available.

Photo of John WhelanJohn Whelan (Labour)
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I intend no disrespect but that is more or less the same answer I received from the Muiríosa Foundation one month ago and from the Department of Health when I made contact last week in respect of this matter. It does not get to the underlying problem whatsoever. Everyone involved including the families affected know full well about the nature of the cutbacks and the strain on resources.

I caution the Minister of State that the share-a-break model being peddled by the Muiríosa Foundation and its chief executive is fraught with dangers in terms of the health and safety of the clients involved. It puts Down's syndrome children at risk. I implore the Minister of State to use his good offices to discuss the matter with the Muiríosa Foundation. The foundation is only starting to engage with families now after the horse has bolted and the stable door has been closed and that is not the way to do business. This has come like a bolt from the blue for these families.

I understand that no meaningful savings will accrue from what is proposed. The clients are going to end up back in hospital - in institutionalised care - which will cost taxpayers and society a great deal more in the long term. Much of the debate in respect of the delivery of health services in recent weeks has been characterised as a struggle between right and left. I would characterise what is happening in this instance as a struggle between right and wrong. It is wrong to place children with Down's syndrome at risk, particularly in circumstances where savings will not accrue. Consultation has not taken place in respect of this matter. The Government and the Department must realise that unless this matter is resolved through ministerial intervention, those who are affected will end up protesting at the gates of Leinster House.

3:50 pm

Photo of Alex WhiteAlex White (Dublin South, Labour)
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I will certainly communicate the Senator's concerns on this matter to the Minister. I cannot say anything further about the specific issue to which he refers but I fully appreciate the importance of the point he has made. It is fair to state - the Senator has acknowledged this - that the entire health service is struggling. In the 48 hours that I have been in my new position, it has become clear to me that we are struggling with cost constraints right across the board. Grappling with this difficulty is a daily, if not hourly, preoccupation for everyone involved. The Senator's intervention in respect of this particular issue it very timely and useful. I will ensure that his concerns are communicated to the Minister.

The Seanad adjourned at 4.15 p.m. until 2.30 p.m. on Tuesday, 9 October 2012.