For the parents of an adult child with a severe intellectual disability, we take it for granted that it is us who will be making the decisions on behalf of our child. At the moment this would be true of the vast majority of parents in this position. People have become so used to this situation that it is widely accepted that this is the law. Unfortunately, this is very far from the truth.
Ward of Court
Although this system was supposed to have been replaced some time ago, the current position is that the incapacitated adult must become a Ward of Court before another person could legally make decisions on their behalf. This usually happens if the incapacitated person is or becomes an owner of property. When a person becomes unable to manage their assets because of mental incapacity, an application can be made to the High Court for them to become a Ward of Court. The court must make a decision as to whether they are capable of managing their own property for his or her own benefit and the benefit of his or her dependants. If it is decided that the person cannot manage their own property because of mental incapacity, a Committee is appointed to control the assets on the Ward’s behalf.
The Committee more often than not consists of a family member or members.
In other words, the Ward of Court process makes it possible for family members of the adult child (or perhaps sibling) to be the guardian of that person, even though the person in question is also an adult. The “ward” comes under the jurisdiction of the courts, which means that the court is in overall charge of that person’s affairs. However, since it would not be practical for the courts to monitor the day-to-day activities of all Wards, the Committee is in place to deal with these.
As the original intent behind this system was management of property/ assets, in such cases, no official decisions regarding medical treatment, such as surgery or end-of-life treatment, may be taken in respect of the person, without the permission of the court. The wardship committee is essentially there to deal with the person’s property, and perhaps “less serious” medical treatment (whatever that might mean), while the court must give permission when it comes to “serious” medical treatment. In deciding whether to grant permission for serious medical treatment or procedures, the court must decide what is in the “the best interests” of the Ward.
When an adult person becomes a Ward of Court they are essentially reduced to the legal status of a child, as they can no longer make decisions that might have legal consequences. However, as we have seen, these are usually concerned with managing the person’s property. It should not automatically mean that because you cannot understand how to manage your property, you cannot understand the risks and rewards of medical treatment. This is because our law follows the functional model of capacity, which is issue specific. In other words, a person’s capacity is measured in relation to the task they are being asked to do. This means they can lack capacity to do certain things, but might have capacity to do other things. There is no longer a “one-size-fits-all” approach.
For most people this discussion is academic, in any event. The (vast) majority of parents don’t apply for their adult intellectually disabled child to be made a Ward of Court because the court application is lengthy and expensive and beyond the financial means of most people.
When it comes to medical treatment for example, those decisions are generally made by the parents in consultation with the doctor, but not because their adult child is a Ward of Court, it is simply the practice.
The treatment decision is ultimately made by the doctor (or other health professional) and the doctor’s only defence (if indeed it is a defence as this is not clear-cut), is that it was in the best interests of the patient to have that treatment or procedure. This clearly ignores the fact that consent was not sought, nor obtained, from the adult patient prior to the treatment or procedure.
Some would argue that the doctor is protected by the doctrine of necessity (which essentially means you are justified in committing a smaller evil in order to avoid a greater evil: giving the treatment without consent in order to avoid serious illness or death).
The problem with using the doctrine of necessity is that it can never supply consent, it is simply a defence to a later claim of assault. There is also a strong argument that the doctrine can only be used in emergency situations, usually where the patient is unconscious and is physically unable to give consent. Clearly the majority of medical interventions are not to avoid serious illness or death, they are largely routine.
However, in the United Kingdom, the House of Lords decided that the doctrine of necessity could be extended beyond emergency situations, and could include the provision of (necessary) healthcare (Re F (Mental Patient: Sterilisation)  2 AC). It is highly likely that the Irish courts will come to the same decision if the question is asked of them.
For most patients with limited or no capacity, healthcare decisions are made without any court involvement at all. It is interesting to note that the HSE have put together a document, the National Consent Policy (2014, updated 2016). This describes, in a logical progressive sequence, the steps the doctor should take where a patient does not have the capacity to consent to treatment.
In a sense the document is legally accurate, as it makes it clear that family / next-of-kin have no legal status in decision making, and really are to be used in determining what the patient might have said about the proposed medical treatment when they had capacity. Of course, this presupposes there was a time when the person did have capacity, which would not apply to most people with a severe intellectual disability. They have been incapacitated for their entire life.
Another step contained in the HSE document suggests encouraging, and thereafter supporting the patient to be involved in the decision-making process. Again, this is hardly applicable to a person with a profound intellectual disability. In fact, it is sometimes dangerous to ‘involve’ the intellectually disabled patient, as they will readily agree with anything you might suggest.
In spite of this HSE document, and the law, anecdotal evidence would suggest that “consent” is almost always sought, and supplied by, family members / next-of-kin, without any court involvement.
It is probable that if a doctor were sued for treating an intellectually disabled patient without their consent, their defence would be that they had acted with “care and diligence” and in accordance with the very same HSE National Consent Policy!
It is highly unlikely that a doctor would ever be sued in any event. The very same people who supplied the consent to the doctor, namely the parents / family members, would be the only persons with sufficient standing (sufficient interest in the matter) to bring an action on behalf of their incapacitated adult child in the first place.
This means that parents of severely intellectually disabled adult children are in a legal Catch 22, which needs to be urgently remedied. They should have access to a quicker and cheaper form of legal authority granted by a court, which protects their decisions on behalf of their child.
The Decision-Making Representative
Chapter 4 of the Assisted Decision-Making (Capacity) Act of 2015 allows the Circuit Court to appoint a Decision-Making Representative (DMR) to make decisions on behalf of an incapacitated adult. This representative will often be a family member, as Section 38(5) says that when considering the suitability of a person to be a DMR, one of the things the court must consider is “the desirability of preserving existing relationships within the family of the incapacitated person”.
However, it does not have to be a family member, and the DMR could be a close friend or even a carer who knows the person well.
You might ask what is the difference between this procedure and the Ward of Court procedure?
Well, the obvious difference is that the application will be to the Circuit Court and not the High Court, which will hopefully make it a little speedier and cheaper.
However, it is to be hoped that a fundamental shift in judicial thinking will be the biggest change. With the wardship system, the High Court relies heavily, sometimes exclusively, on medical evidence. The medical evidence that is led is in turn guided by a status approach, which is essentially a cognitive skills test, which does not cater for the notion that a person might be incapacitated in certain areas, but not in others.
As was mentioned earlier, the Act has accepted the functional test for capacity. This is an issue-specific and time-specific test, very different from the “all or nothing” test that exists for wardship. The functional test recognizes that people have good days and bad days, or that somebody might easily understand one thing but not another, or might just require a little help to properly understand what they are being asked to do.
The Circuit Court will need to examine whether the intellectually disabled adult has the ability to understand, at the time the decision is being made, the nature and consequences of the decision in the context of the available choices. This decision might be determined on the evidence of family, friends, carers, and even the person themself.
This will also mean that certain persons who are currently Wards of Court will be released from that bondage, and will be able to enter into an assisted decision-making agreement, as provided by the Act. Clearly some will also remain under the care of the court and a DMR.
Unfortunately, despite being a 2015 Act, the applicable provisions are not effective yet, and we are still saddled with the Ward of Court system. The current government shows no sign of getting a move-on either, for the simple reason that people with profound intellectual disabilities cannot vote, and accordingly are not very high on any government priority list. This was made clear in the 2018 Budget, where a paltry €3 million was awarded for the creation of the offices (and staff?) of the Decision Support Service, the national body responsible for the eventual implementation and monitoring of the Act.
€3 million in a budget where the voted expenditure in the next tax year will exceed €60.9 billion. This gives you an idea where intellectually disabled citizens are placed on the government’s priority list. Whilst our rulers are in this mindset, there is no telling how long it will be before the current antiquated system is finally replaced.