Tuesday, 28 June 2016
Home Care Packages Provision
I welcome the Minister of State at the Department of Health, Deputy Helen McEntee, to the House. She has been a staunch supporter of the Alzheimer Society of Ireland, both locally and nationally. There are almost 55,000 people living with dementia in Ireland and I guess that most of us will know somebody, a family member, a relative or a neighbour for whom this is a reality. The numbers are set to grow to 68,000 people in ten years' time so it is a massive challenge for individuals, for their families and for society as a whole. People with dementia need a wide range of supports that reflect the complex and changing needs of the condition. It is important to diagnose it early to plan ahead and then to get access to counselling services and other services which one will need as the condition advances.
My focus in today is on home care. Most people with dementia live at home and the majority want to stay there in a familiar environment because familiarity is a really important part of being able to live well with dementia. People want to stay in their homes and in their communities. Pat Hume spoke recently about John, and how important being at home in Derry is to him. A recent report by the Alzheimer Society of Ireland, Age Action and the Irish Association of Social Workers in UCD found that the preference of older people is to stay at home for as long as possible and that more than half of older people could remain in their own homes instead of going into long-term care if more services and home supports were available. It is official Government policy to support people to stay at home but it is not happening. We only need to look at the funding divided between long-term residential care and community-based care to see the reasons for this. Between 2009 and 2015, funding for residential care was increased by €84 million whereas the funding for home care decreased by €11 million. One possible explanation, and an issue that must be addressed, is that there is no statutory entitlement to home care. It is discretionary and when the budgets run out, it runs out.However, there is an entitlement to residential care under the nursing homes support scheme. Later this week, the Alzheimer Society of Ireland will launch its pre-budget submission calling on the Government to invest €67 million in 2017 for home care supports for people with dementia. This initial investment would meet the needs of 10% of people with dementia who live in the community. It amounts to a mere 6.7% of the total amount spent on long-term residential care.
There have been some positive moves towards better home care for people with dementia and this must be built on for the future. Under the national dementia strategy, €22 million was set aside by Atlantic Philanthropies and the Health Service Executive, HSE, for intensive home care packages. Will the Minister detail how this money is getting through to people? It is one thing to make the argument that money is being set aside but is it reaching people? To date, we understand that 130 home care packages have been provided out of a promised 500. Will the Minister clarify those numbers? People with dementia have a right to their home and family life just like every other citizen. In April, the Alzheimer Society of Ireland and the Irish dementia working group, which is made up of people who have dementia, launched a charter of human rights for people with dementia. During the launch of this important document, Helen Rochford Brennan, who has dementia and is a wonderful advocate for the cause of advancing dementia care in Ireland, said:
Our rights outlined in the charter launched here today are fundamental to us living well but also for our families. We have a right to information, to diagnosis, to post-diagnosis support. We have a right to community based services and home care, and to be cared for in the place of our choice. We have a right to be part of our community, no matter how progressed our dementia is.
However, we need investment for those rights to be realised. Just as somebody once said that one cannot eat scenery, one cannot eat rights unless they are backed with resources. There must be multi-annual centralised funding and there must be entitlement. I call on the Minister to ensure this issue is addressed in the forthcoming budget.
I thank Senator Kelleher for raising this matter and I congratulate her on the work she has done to date. I am aware that she continues to work specifically in this area. As with the other part of my portfolio, mental health, everybody knows somebody who has been affected by dementia, be it a neighbour or friend, and the numbers affected will continue to increase. Also similar to mental health, there is still a stigma surrounding dementia and the lack of information among the public makes it more difficult to tackle that stigma. It is an issue we must work on and I intend to do that.
As the Senator correctly pointed out, it is estimated that there are 55,000 people living with dementia in Ireland today. By 2041, we expect this to increase to more than 140,000 people. Living with dementia presents challenges for those with the condition, their families and their carers. The majority of people with dementia live at home and this requires proper supports and interventions to be put in place. Earlier diagnosis allows for better planning and management of the condition and is in the best interests of those with dementia and their families. It is important that there is clarity about the options that are available, so families and carers can make good choices in an informed way. As both the Senator and I mentioned, there is often a stigma associated with this condition which is largely based on stereotyping and, as a community, we must tackle this.
In December 2014, the Irish national dementia strategy was published with the objective of increasing awareness, ensuring timely diagnosis and intervention and developing enhanced community-based services for people with dementia. The main aim of the strategy is to enable people with dementia to live well in their own homes and communities for as long as possible and it sets out ways of achieving this. People live longer, healthier and happier lives when they are in their homes, regardless of whether they have dementia. Resources should be directed to provide the best possible outcome for those with dementia, their families and carers. The strategy is accompanied by a resourced national dementia strategy implementation programme which is co-funded by the Health Service Executive and Atlantic Philanthropies. This programme represents a combined investment of €27.5 million over the period 2014-17, with Atlantic Philanthropies contributing €12 million and the HSE contributing €15.5 million. Key elements of this initiative include: €22.1 million for the roll-out of a programme of intensive home supports and home care packages for people with dementia; €1.2 million for the provision of additional dementia-specific resources for general practitioners, who are the critical and initial point of contact with the health system for those with dementia - the resource material will include training materials and guidance on local services and contact points; €2.7 million for measures to raise public awareness, address stigma, and promote the inclusion and involvement in society of those with dementia; and €1.5 million for the establishment of a HSE national dementia office.
A significant element of this investment programme will focus on the delivery of intensive home care packages for people with dementia, with up to 500 people with dementia and their families expected to benefit from these packages over the lifetime of the implementation programme, which will extend over a three year period from 2015 to 2018.
The roll-out of intensive home care packages commenced in January 2015 and monitoring of the allocation and uptake of these packages is ongoing, as the Senator rightly said, with only 133 persons benefiting to date. At present, there are 85 people with dementia in receipt of an intensive home care package, and perhaps I could revert to the Senator specifically on the speed of the uptake and how that is progressing.
In addition to the intensive packages the Health Service Executive, HSE, will continue to provide mainstream home help, routine home care packages and other appropriate community based supports, such as day care, respite, etc., to people with dementia whose needs have been assessed as requiring these supports and within available resources.
I am examining the question of putting this issue on a statutory footing and I would welcome the opportunity to discuss that with the Senator. I am aware that Members of this and the other House will meet with the organisation this week so we will hear more following that meeting. There is still much work to be done, and the focus of our funding needs to change in terms of where it is going. We must make sure it goes to the right place, that is, to keep people in their homes. I look forward to working with the Senator on this issue and I would welcome the opportunity to meet with her.
I thank the Minister of State. I know that is a sincere offer and I will take her up on it. Eighty-five people are getting access to the intensive home care packages but all of us in the Seanad probably know 85 people who need them. The need is vast, and we must make sure that we are getting to the body of people who need that kind of help because people are struggling in the here and now. People have lost faith in strategies. It has been said that we have strategy deficiency implementation disorder in Ireland. We encourage people to believe there is real intent but we must ensure those strategies, commitments and investments are reaching people with dementia to allow them live well, as they wish to and can do, and that their carers are properly supported. I believe that until such time as this service is put on an entitlement and a statutory footing, we will continue to struggle with this it. I welcome the Minister's commitment to work on it.
I agree with the Senator. Through the bodies, groups and individuals I have met in recent weeks, I am aware that everybody is on the same page and knows we have enough reports and strategies. What we need to do now is TO implement them. Implementation is key at this stage and we need to make progress on that. The figures are increasing at a high rate within such a short space of time and we have a window to try to deal with it now before it gets out of hand. I look forward to working with the Senator.