Before the suspension I raised the area of personal social services. I made the point that in our system health and social services come under the one umbrella. Often, the problem in the past was that one side might have been out of kilter with the other. People with disabilities are not of the same size, so the same fit does not work for everyone. It is also a function of the life circumstance of people. Deputy O'Connor made the point earlier that the position people find themselves in, regardless of whether they are in a relationship, have children, are employed or whatever, is part of a whole raft of socio-economic factors that impact as well as the particular condition under review. The system has to be robust enough to work from there outwards. Ireland has much ground to make up and at the same time considerable progress has been made. In the past there was not much talk about personal assistance or home support and people just went into an institution. A great shift has come about within a relatively short space of time but we have not caught up with the ramifications of that. Now is the time to connect the various matters in the context of health service reform and the mainstreaming of services and reports. The little discussion we had before the break as regards community employment is one of a myriad number of examples where matters have to be stitched in between different parts of the health system.
All of these matters require a cultural shift in the way organisations think about the issue, from Members of the Oireachtas to the broader health system. There has to be a stronger culture as regards dealing with these issues in partnership.
Earlier there was a discussion about services for the elderly, people with disability and children. These areas are ostensibly separate, but are they? A child can be disabled. An adult with children can be disabled. People are living longer, whether disabled or able-bodied. There is the potential for less functionality and various disabilities and conditions for people as they grow older. In addition there are more people with disabilities who would not have survived in the past. That is a measure of success in the midst of much concern over the health services. People with spina bifida, for example, would not have had a similar survival rate 40 years ago. One can think of many similar examples.
Now there are other issues, however, and we are not well-equipped to think on the ramifications of these. On the issue of service centred planning, services and systems have to be designed from the perspective of the lives and circumstances people are in, not from the viewpoint of how the system works.
Regarding the Disability Bill, Part 2 deals with the whole area of definition, assessment of need, complaints procedures and so on. That all relates to the specialist support services people need, whether occupational therapy, physiotherapy, speech and language therapy, personal assistance or whatever. Ultimately, these are nothing more than enabling services and not an end in themselves. A person has a personal assistant because otherwise they could not do what the rest of us get on with, in terms of getting dressed, washed, going around the house, doing various chores and getting out and about. They are not an end in themselves. It is useful to think about this in terms of these services getting people to a point where they should be able to engage in other matters such as education, community activities, training, using public transport, etc. Increased funding is going into the area of personal social services and from our viewpoint, much more has to be invested. However, when people are up first and best dressed, so to speak, can they go anywhere? Is the house congenial, a matter for the Department of the Environment, Heritage and Local Government? Can they get to the training course? If they reach first and second level, can they go on to do something else? If they get jobs in the Civil Service, will they be able to do career development, go to college at night time or whatever? The real value for investing in personal social services, the health Vote, is in respect of matters that may be accessed outside of health. That brings the remit of this committee into focus. It is like community employment in so far as other actors need to be brought into the picture.
I will not go back over the issues and concerns surrounding the Disability Bill as regards definition, assessment, etc. Part 3 of the Bill is about public services. The first agreed programme for Government in 1997, which was continued in 2002, stated: "We are committed to ensuring that disability is placed where it belongs, on the agenda of every Government Department and public body." That is a clear, simple outline of Government policy. If one is dealing with transport and the public who use it include people with disabilities, one must face the problem of how to deal with this. Similarly with education and housing, the needs of disabled people must be factored in among the diversity of people who comprise the public.
Part 3 of the Bill needs to stitch in a statutory duty on Departments to carry their share of responsibility in this regard and it does not do that sufficiently. It is well articulated in Government policy and when the Taoiseach launched the disability strategy in September, his speech was peppered with that understanding. It was a great disappointment to me to read the way in which the Bill was constructed. I do not want to spend too much longer on that, but there is a misfit between the way it is constructed and what I regard as sound Government policy as regards this area.
The Department of Health and Children has been dumped on for generations, as alluded to by Ms Winslow when she talked about transport. That happened because of the lack of mainstreaming and the disabled were automatically equated with the health area. There is an opportunity for Members of the Oireachtas, particularly members of this committee, to make sure other Departments come half way. In the Health Act 2004 one of the first objectives of the HSE is to deal with the integration of services such as DPG, housing, in-home support, aids and appliances and so on. Other Departments have to step up to the mark on housing. The sectoral plans provided for in the Disability Bill 2004 are weak and a disappointment. Every Department and public body has to disability proof its activities from policy planning to operational activities. It is not just about tweaking operational issues. It would be a useful first step to give Departments an annual opportunity to explain before Oireachtas committees what they have planned for people with disabilities.
There is one telling issue on the reform programme which is serious from our point of view. We keep hearing that there are 100,000 whole-time equivalents in the health service. The Tánaiste recently spoke about 120,000 people, as distinct from whole-time equivalents. It is a fact that these figures do not allow for a large group working in voluntary organisations. For example, there is a figure of between 1,000 and 1,500 for the IWA, not one of whom is counted. The people concerned are actually part of the health service and helping others. The census showed that there were just under 150,000 carers, of whom 40,000 work more than 43 hours per week. They are human resources in the health service and represent 40% of the total we are told work in the system. That is the challenge of integration — we have to acknowledge that there are many people working in different places and in different ways. Before we can get to fund them, we must acknowledge what we have and integrate the voluntary sector and the HSE in planning.
Ms Winslow spoke about peer counselling. People are very clear about some services such as personal assistance, transport, day and respite programmes. However, there is much work done by organisations which is less obvious such as the provision of information, advice, support and peer counselling. These services are very much part of the fabric of providing assistance. If someone is diagnosed with epilepsy, the first thing he or she will do is to seek out an organisation which deals with the matter.
We have often been frustrated in dealing with the health sector and the public sector in general. This is because staff from each Department believe some issues have nothing to do with them. At one level this is true but for an individual or a family, all services interconnect. This has not been solved from a planning perspective. We are at a magnificent stage for the health service because the old system has been levelled in the past couple of years. The architects are designing a new one. Unlike Leinster House, this building was designed to cater for people with disabilities. There is an absolute obligation on designers to remember that members of the public suffer from disabilities and disabling conditions. Deputy Cowley made the point that conditions are not always chronic. There are now more medical and surgical support interventions to keep people healthy. However, there may be times of crisis when people do need support. They should be able to get on with life but receive the service that they need when they need it.
We have heard from Members of the Oireachtas, members of health boards who are dearly departed and officials in the public and the Civil Service.