Niall Collins (Limerick, Fianna Fail) | Oireachtas source

Fianna Fáil supports this important Bill, which makes strides towards addressing a very sensitive area. It builds on and advances the 2008 legislation drafted by a former Minister, Dermot Ahern, and underlines the importance of moving towards a supportive legal framework for individuals with intellectual disabilities and impaired decision-making capacity.

According to the 2011 census, some 57,000 in Ireland people have an intellectual disability. The Bill must be strengthened by ensuring its provisions are open to all, in line with the UN Convention on the Rights of Persons with Disabilities, which was adapted in 2006. These proposals mark an important step towards Ireland fully ratifying that convention and consolidating the role of those with disabilities in society. However, there are broader issues at play beyond the wording of a legal framework. The Government must re-emphasise its commitment to the disability sector by bringing to an end the perverse situation where large numbers of people with disabilities are having their entitlement to a medical card reassessed. That exercise is causing massive fear and anxiety. At the same time, carers are being penalised by way of the savage 20% reduction in the respite grant implemented last year, which places them under even more pressure. Having a legal framework in place is a positive step, but it requires a coherent, comprehensive plan if laws are to translate into a positive impact.

The Bill aims to update and modernise Irish law in terms of assisting those with limited intellectual capacity and will, where possible, enable greater levels of autonomy for those individuals. The legislation updates the Lunacy Regulation (Ireland) Act 1871 and creates a new flexible approach which allows a hierarchy of decisions depending on importance, rather than a black or white binary division whereby all decisions must be entrusted. It achieves this by removing the current all-or-nothing practice which excludes the possibility of a hierarchy of decision making.

In order to be certain that the Bill has the impact envisaged, we need to ensure its provisions are open to all individuals affected. Several concerns relating to what is proposed have been raised with us, and we will seek to address them on Committee Stage. One of these is the lack of clarity as to how the new legislation will interface with the Mental Health Act 2008. Another issue of concern is that access to supports which assist in the decision-making process should be broadened to ensure full adherence with the underpinning principle of autonomy. The Irish Human Rights Commission has recommended that there be a specially tailored legal aid scheme for people dealing with capacity assessment or decision. The Bill must ensure effective access to the law by introducing such a scheme. Given the complex nature of these issues and the significant shift it marks in the current system, we are proposing that the legislation be reviewed after five years to ensure it is in keeping with best international practice. This is important in light of ongoing advances in the medical world. The Bill provides for the establishment of an office of public guardian within the Courts Service, with supervisory powers to protect vulnerable persons. This office must be properly resourced to ensure its role in expanding decision-making powers is effectively implemented.

In addition to the areas specifically dealt with by the legislation, there are other aspects that must be considered in the context of these proposals. Concerns have been expressed to me that the wards of courts fund is being poorly invested and there is a lack of transparency around the fund. Some 2,650 wards of court are invested in that fund. A vital aspect of this discussion is the failure to bring forward a national disability strategy. To breathe life into the new legal framework, the Government must focus on developing a coherent strategy. The current systematic reassessment of medical card provision is generating massive fear and uncertainty among those struggling to cope with the high costs of disability. A new legal framework will mean little if it is not backed up by substantial resources that will empower people, such as family members who want to look after affected siblings or children. To date, however, the Government has failed to develop a coherent and effective strategy to integrate disabled people across a range of intellectual and physical limitations.

The 2014 budget, and Government policy in general, fail to integrate people with disabilities coherently into public service reform. The most recent budget again fails to meet the legitimate ambition of people with disabilities to live in the community with dignity and independence.

The national disability strategy implementation plan published in July 2013 was heavily criticised by the Disability Federation of Ireland, which stated it lacked ambition and a genuine whole Government approach. The need for a broader strategy is vital, in light of the fact that some 600,000 people, 18.5% of the population, have some form of disability. Some 57,000 of these have an intellectual disability. In short, disability is a major social justice issue.

Since it came into power, the Government has overseen cutbacks that have had a devastating impact on people with disabilities, such as those with impaired decision-making capacity. The annual respite care grant has been reduced from a rate of €1,700 in 2012 to €1,375 for 2013. This massive cut hammered struggling carers and the vulnerable people they look after, such as those with profound intellectual disabilities. More than 70,000 carers will be affected by the cut, in particular 5,000 recipients who are solely reliant on the payment to support their assistance. Many of these carers are guardians for people with intellectual disabilities. The €325, or 20%, cut hits people who maintain the home as the centre of care. Such high level care brings substantial additional pressures on the household budget, in terms of increased energy and fuel, and often requires the transfer of patients across care settings, adding to transport costs. The Government is hitting these carers hard by removing their discretionary one-off annual payments, which are an integral part of their yearly budget. This impacts on the individuals they are entrusted with looking after.

The deep cuts to the household benefits package will directly affect people with disabilities, as they often have additional costs in the areas of electricity, gas and telephone. The prescription charge for medical card holders has quadrupled from 50 cent to €2 per item. This measure will greatly affect people with chronic conditions and disabilities in need of monthly medication. The drug payment scheme threshold has increased by 44% since 2010 when it was just €100. Budget 2013 announced another increase to €144. Families with a disabled child or adult not covered by the long-term illness scheme or medical card will be hardest hit. The incomes of people with disabilities will be greatly affected by the new HSE service plan, which strips almost €666 million from the HSE budget. Against the backdrop of these cutbacks, the legal changes heralded in this Bill will not have any real impact unless the resources are there to give them genuine effect.

An area of pressing concern that has been raised with me by several parents is the lack of transparency around the investment of the wards of court fund. The Courts Service operates a fund for some 18,000 people, including some 2,650 wards of court. The total value of the fund is approximately €1.5 billion. Families are deeply concerned that investments have gone bad and that the money put aside, usually as a result of a court settlement, has been squandered by high risk investments and that the situation has been exacerbated by the volatility on the markets in recent years. Wards have no say in the kind of investment used by the fund. They also have no access to financial statements, beyond rudimentary facts which must be specifically sought rather than sent out as a matter of course as would happen with any normal investment fund. The lack of specific financial investment advice, as the process is mediated by the Courts Service, is a continual source of frustration for many families.

Wards are justifiably concerned that the losses sustained by the fund are not being regained, leaving them exposed to insurmountable financial burdens in the future. The wards themselves are unable to work due to the profound injures and intellectual impairments from which they suffer. They have also raised significant fears over the levels of professional fees being extracted from the fund and the lack of oversight and transparency in this aspect of the process. Will the Minister of State and her colleague, the Minister for Justice and Equality, Deputy Shatter, undertake a review of the highly lucrative court funds system to ensure it works for these most vulnerable of people?

This legislation is a positive step forward for the State. We can work towards enhancing it on Committee Stage, in keeping with the provisions of the UN convention. I trust the Minister will engage with the issue of the wards of court fund. Ultimately, the test for the Bill and the Government's impact on the disability sector will lie in what resources it is willing to commit to it.

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