Finian McGrath (Dublin North Central, Independent) | Oireachtas source

I am grateful for the opportunity to speak on the Assisted Decision-Making Capacity Bill 2013 which finally will replace the lunacy Act of 1871. I welcome the publication of the Bill as it was the main impediment to ratification of the United Nations Convention on Rights of Persons with Disabilities. For me it is all about their right to make decisions about their lives, but more importantly it is about equality and respect for the person. It is very important to state this is human rights-based legislation. There can be no hedging, ifs or buts; one either believes in equality one does not. If one believes in equality one treats the person equally as one would like to be treated. We can have all the legislation in the world, but if the State and its citizens believe that equality it must be implemented. One must eat it, sleep it and talk it, but above all one must act on it, particularly with regard to legislation. I state this as a legislator and as the parent of a daughter with an intellectual disability. I know the positive view of the legislation parents have and it is important to state this in the debate.

The new Bill will replace the wards of court system and will introduce a number of new systems to support people when they need to make decisions. The principles underlying the Bill include the presumption of capacity, that no intervention will take place unless it is necessary, that any act done or decision made must be the least restrictive of a person's rights and freedoms, and that any actions under the Bill must give effect to the person's will and preferences. The Bill also proposes to change the law from the existing all or nothing status approach to a flexible functioning definition. This means capacity will be assessed only in the matter in question and only at the time in question, so if a person is found to lack decision-making capacity in one matter it will not necessarily mean the person also lacks capacity in another matter. These are the nuts and bolts of the Bill.

Let us not forget what is going on in the broader society and what is going on in the real world for many people with disabilities. We have seen the crisis and the row in recent days over the services in the Central Remedial Clinic in Clontarf in my constituency. Many of us were very annoyed and infuriated with some of the antics and carry on. We must also look at what the Government is doing. My problem is the Government talks about equality and makes smooth comments about it, but the reality is many cuts have been made in the disability sector. Almost 35,000 children are waiting for speech and language therapy. Those on the disability allowance receive €847 a year less since 2008. Only 5% of adults with an intellectual disability are in employment. Resource teaching hours have been reduced by 15% since 2011. I mentioned the Central Remedial Clinic which has had cuts of €3 million and St. Michael's House which has had cuts of €12 million. Cuts of €666 million will be made to the health budget. We can talk about equality and rights, but the Government should stop shafting people with disabilities. It is not acceptable, it is not on and this side of the House will fight it. This is about human rights, the right to services and the rights of young adults and children in the State. As the Minister of State mentioned earlier, approximately 200,000 people will be directly affected by the Bill.

Although I strongly support the Bill concerns exist and I want to mention some of them. Mental Health Reform raised a number of concerns in its submission which it asked me to raise in the debate. It wants to ensure individuals with a mental health condition can avail of the provisions in the Bill. It wants clarification on the interaction between the Mental Health Act and the Bill, on the position of persons subject to wardship, on informal decision-making, on the use of restraints and on the position of incapacitated but compliant patients.

Will the Minister of State consider my proposals in this area and the proposals of Mental Health Reform? It should be ensured that all individuals in approved centres as defined by the Mental Health Act 2001 can avail of the provisions in the Bill. I would like a timely review on the position of all persons subject to wardship. I would also like to ensure the legislation protects people who are incapacitated and compliant. I would like the scope of informal decision-making to be restricted, particularly with regard to restraints and persons in mental health services. I would also like concerns regarding the potential overuse of medication to be addressed. Advance directives should be introduced which would be binding with regard to mental health treatment apart from life-saving emergencies.

The Mental Health Lawyers Association has pointed out a number of flaws in the Bill which prevent it from being fully in line with the Convention on the Rights of Persons with Disabilities. In particular it seems the provisions of the proposed legislation may not be available to people suffering from a mental disorder with regard to their treatment under the Mental Health Act 2001. The convention expressly states people with disabilities, including mental health problems, should enjoy legal capacity on an equal basis with others in all aspects of life. I encourage the Minister of State to examine these issues.

Another category to which consideration must be given is that which comprises senior citizens. The Bill has the potential to affect three groups within this category. The first such group is made up of those who have a full decision-making capacity for most of their lives but who suffer impairments to this as a result of conditions, such as dementia, associated with the process of aging. Dementia is an irreversible and progressive disease. As the condition progresses, those who develop it may require differing levels of assistance with decision making. The Minister of State knows well that the numbers of those with dementia are on the increase. Nationally, the number of people living with dementia is due to rise from 41,447 in 2006 to between 67,500 and 70,000 in 2021 and to between 140,500 and 147,000 in 2041.

The second group is that which comprises people suffering from an acquired brain injury such as stroke. An injury of this nature may be amenable to treatment or those suffering from it may recover all or some of their decision-making capacity. The Irish Heart Foundation states that approximately 10,000 people in Ireland suffer from strokes every year. An estimated 30,000 people with disabilities resulting from strokes are living in the community. Cognitive impairment accounts for one third of acquired disability among stroke sufferers.

The third group is that made up of senior citizens who have had intellectual disabilities since childhood and who have now reached the age of 65. Currently, there are 3,538 people in this country who are aged 55 or over and who have intellectual disabilities. According to Professor Mary McCarron of Trinity College Dublin, there is a growing population of such individuals as a result of an increase in longevity. Professor McCarron also states that in the next ten to 15 years, the largest proportion of adults with intellectual disabilities will be adults over the age of 55. I raise these issues because we must plan for those with disabilities and senior citizens.

I urge the Minister of State to consider a number of other important recommendations. In addition, I am seeking clarification form the Department of Justice and Equality on the position of persons currently in Irish nursing homes who have activated the care representative law. I ask that the Departments of Health and Justice and Equality work together to ensure that the same definitions and rules on restraint will apply to persons residing within the community as those which apply to those residing in nursing homes. The Department of Justice and Equality should consult the HSE on the practicalities involved with regard to the change to its policy on informed consent. I ask that the Minister of State and the Government examine the possibility of amending the Criminal Justice (Withholding of Information on Offences against Children and Vulnerable Persons) Act 2012 to include carers as individuals who can report offences.

The suggestions I have made are positive. Overall, I welcome the legislation and I ask the Minister of State to take on board my views.

See this speech in context