John Dolan (Independent) | Oireachtas source

I thank the Minister, his team and the HSE team for the answers I received to the questions I had submitted. I had four questions. I wish to commend the Department of Health, which I think, sadly, is the only Department so far to mention its public sector duty in its statement of strategy. I consider that critical. The Department picked up on that as well in terms of the UN convention and treating those with disabilities and mental health issues on an equal basis. I underline and appreciate that point. Those are leads that could be followed by other Departments and the Minister of State, Deputy Finian McGrath, may be in a position to make that point to others as he is going along.

My first question concerned the statement of strategy, particularly where it stated that it would develop policies and proposals to promote community-based supports including innovative enhanced housing options. My question asked what kind of policies were in place and there was a pretty decent answer to it. That said, there was a lot of detail about processes and structures but there are still almost 4,000 people with disabilities on the social housing waiting list for the past four years. People might ask what this has to do with health. However, the connection between those with disabilities and health is that they are stuck in congregated settings. Men and women of 35 years and 40 years of age are living at home with their parents, which is not acceptable. These are interlinking issues. I note the comments of the Minister of State, Deputy McGrath, regarding congregated settings. However, even if more than 200 are taken out of those settings this year, the answer I received suggested that one third of the total number which, off the top of my head, I think is approximately 2,700 will be moved by 2020, but there is still another two thirds. This does not seem to me to be a priority that is being pushed but rather something that remains "in process". As I understand it, there are more than 1,000 young people aged less than 65 years in residential and nursing homes. I strongly relate that fact back to the lack of supports for people in the community and the shaving away year after year of after-supports in the community. Those are my comments. There is a huge amount of ground to be made up to get beyond having processes and strategies and to making things happen for people.

I will come back to the issue of personal assistants in a moment, because it relates to another question. The Minister of State, Deputy McGrath, made some comments on it.

My second question related to foetal anticonvulsant syndrome, FACS Forum Ireland and the drug - I will mispronounce it - valproate. Will the Minister and those from the HSE outline what has been done to enhance diagnostic process and standard operating procedures within the HSE? What has been done to improve patient safety warnings and adequate implementation of the European Medicines Agency's ruling of 2014? I want to be sensitive and measured when speaking on this issue. Parents invest all of their emotion and love in their children. There is no big deal about that - it is a fact - but they probably do not realise how much emotion and love they have until they have to deal with difficult issues and this is one of them. We have already mentioned some other issues this afternoon. A helpful response was provided, but for me it is still short on issues such as good governance and practice. I am not convinced that we have got to that point.

It would be useful at this stage if the Minister were to have a short meeting with representatives of FACS Forum Ireland to get the ball rolling and to energise those in the Department of Health and the HSE to work with them. I see the Minister's intent but I am not convinced. As a public representative, this is about being assured that good systems are in place. I am making a reference. One of the quite a number of conditions that can be caused as a result of prescribing this to women with epilepsy is neural tube defects. It is just a coincidence that it has already been mentioned. In the first paragraph, the response acknowledges strongly what is required. It goes on to state that the HSE is aware of the issues but, when we get onto the bullet points and particularly towards the final part on monitoring the effectiveness of the communications and follow up, the language used includes "could be urged", "could be repeated" "[c]onsideration of [an] opportunity to conduct" and "[s]uch collaboration could". Perhaps it is the way it is written but I am not getting a sense of urgency.

Thanks to our health services, children born today have 60, 70, 80, 90 or maybe 100 years of life ahead of them. For these children and others that could be 80 or 100 years of disability life years. It is 60 for their parents, give or take. It is not like us codgers here who may have three, four or five years on average at the end of our lifespan. This is a big ticket item for many people.

The European Facts Forum estimates that over a 30-year period there could be 270 to 360 children with developmental problems caused by Valproate. There are 100 children with malformations at birth such as neural-tube defects and cleft palate. The director of clinical genetics in Our Lady's Hospital, Professor Andrew Green, has a database indicating that there are currently 43 children with this diagnosis. It would be helpful to have a short meeting with this group. There are obviously parents involved in it, but there are a number of organisations that can help practically to start moving on the message and toolkits.

I now want to move on to the question of personal assistants. Before the last quarterly review, I said that personal assistants' hours are particularly crucial in enabling those with disabilities to live independent lives. However, no explicit reference was made to personal assistants in the statement of strategy. There were strong commitments made to independent living, however, which I am pleased to hear about. The answer has laid out a number of things that aid independent living.

This brings me to some helpful information I have been given. There is a division between personal assistants' hours and home supports. I am pleased to see that because when I was a member of the Eastern Regional Health Authority, 15 years ago, we got reports that bundled everything. The Minister of State, Deputy Finian McGrath, has told us that there are 1.4 million personal assistants' hours this year for about 2,400 people. His target last year was to provide 1.3 million, yet his activity was 200,000 more than that, so let us be clear. Forgive my percentages, but there is probably 6% or 7% less provision of personal assistants' hours this year than was the outcome last year. That is on the basis that the target was 1.3 million, while the activity level was 1.5 million.

We find different numbers, but basically the same outcome, when one looks at home support hours. That tells me that there will be fewer personal assistants' hours provided this year than last year. Can someone please tell me what has changed to dampen the need for that service? For 2,400 people that works out at fewer than 600 hours per person per week, which is two hours per day. There is an extremely strong rationing of that service. We know that there is a significant unmet need.

I knew a lady for many years who passed away two years ago, and she had about 70 hours per week. They were not sliced and diced among seven or eight other people. I am not saying they did not need them but that is not the spirit of personal assistance. We will have problems until we get moving on that.

I had a straightforward question about funding for the mental health aspects of A Vision for Change. It has come to the end of its tenth year and has been a difficult period. There is probably more pressure around mental health now. It is also a co-morbidity issue for people with other conditions. They are serious matters and I am unhappy with the reassurances that have been given.

Others have referred to the Disability (Miscellaneous Provisions) Bill. I know that while the Minister of State is keen to progress the legislation, it is frustrating that events have overtaken us in recent weeks. The Minister of State said that to move it quickly to Committee Stage a lot of the process will depend on the committee. I am concerned that the Bill, as published, has dropped the word "equality" from its Title. I will not get too upset about that, other than to say that on Second Stage in the Dáil, the Minister of State said he would deal with a number of issues on Committee Stage. His Dáil colleague, Deputy Broughan, said that in his 25 years in the Oireachtas he had rarely, if ever, seen a Bill introduced by Government where a Minister stood up on Second Stage and said: "By the way, we're going to introduce a number of amendments on Committee Stage." There are a number of serious matters that nobody has had sight of and which will come in on Committee State. Beyond labouring the point too much - and I say this with absolute respect - for people with disabilities it has gone beyond another timeline commitment.

The State promised to sign the international convention and ratify it. Ratification is a solemn international promise that the Government will get on its bike and get on with the work. I met my European colleagues at the weekend and know that we are well ahead of quite a number of European and other countries. If there is honesty to the Irish approach, the Government should say it will put a decent, cross-departmental package in place for the next budget. There are a lot of issues involved, including employment, health and social protection. That would give people confidence that it is not a stalling tactic, although I am not suggesting it is. People do not have that confidence now. That would put Ireland back on the front foot and start things moving.