People with intellectual disabilities are sometimes assumed not to be able to make decisions about their lives. If the intellectual disability is severe, they may be unable to understand or even to communicate their will and decisions. Often their families and carers assume that they have the authority to make those decisions for their loved ones.
This is wrong. Irish law assumes that people either have full capacity to make decisions , or they don't have any capacity. Next of kin and guardianship have no standing in Irish law. If people don't have capacity to make their own decisions, they have to be made wards of court, and then the Office of Wards of Courts will be responsible for making decisions for the Ward.
Parents are supposed to make decisions for their children, but only while they are under age. For most decisions this is defined as over 18, but for medical matters it is over 16.
The Assisted Decision Making Act is a new act that is supposed to help with this. It is a vital bit of legislation that most people know nothing about. It is an act that was passed in 2015, but has not yet been commenced. That basically means it is sitting waiting for a somebody to start it! (yes, I think that is weird too) Here's the link to check it out: http://www.irishstatutebook.ie/eli/2015/act/64/enacted/en/html . It is replacing the Lunacy Act 1871. Now I will openly admit I don't have a deep understanding about legal matters, but the Lunacy Act established regulations for the 'treatment' of 'people with unsound mind' . It also established the current system of 'ward of courts'. I would say that it badly needed changing, and that was what the Assisted Decision Making Act is for.
Capacity refers to an individual’s ability to make their own decisions. Prior to the enactment of this legislation, capacity was black or white – an individual either had or did not have capacity. Up until now a person is either assumed to be able to make decisions (most of us) or not. If they are not, you make them court of ward. That involves going High Court, and is very expensive.
Legal fees from a Wardship application are normally paid out of the Ward's estate. These costs include solicitor's fees, medical report fees and stamp duty.
That also means that that person is not seen as being capable of making any decision for themselves, so they (or people acting for them) have to apply to the High Court for permission to take most decisions, for instance to go abroad or if a Ward needs medical treatment for which a consent form is required by the hospital, the approval of the President of the High Court should be obtained.
Newer thinking on capacity, the ability to make your own decisions, suggest that most of us are capable of making some decisions, but may need help to make others. That is what the Assisted Decision Making Act is all about.
It divides different amounts of help you may need into three different categories. If you only need a little bit of help with finding out information and do the paper work on it or something relatively simple like that, you can appoint a decision making assistant. To appoint somebody to be your decision making assistant, you need only sign a formal written agreement, presently not defined.
If you will need help with understanding and making decisions, you may appoint a co-decision maker. They will get the information you need, they will advise you on the decisions you want to make, and they will inform others of your decisions and make sure those decisions are implemented. To appoint somebody to be your co-decision maker, you will need a written agreement, specifying what kinds of decisions you will want help with. This signed agreement have to be registered with the Director of the Decision support Service within 5 weeks of signing. The co-decision maker will have to fill in a report every year, setting out what they have done during the period, including details of all transactions relating to the person’s finances, together with details of any costs and expenses paid.
If it is believed that a person lacks capacity to a such a degree that they will need somebody else to take decisions on their behalf. This is a Decision Making Representative. This is somebody appointed by the courts. They are required to determine the incapacitated person will about any decision taken on their behalf. I have seen no suggestion for how this determination will be done, on behalf of non-verbal, non-communicative persons with severe or profound intellectual disabilities.
Under this new law, the present system of Wards of Court will be made redundant over time, I think over 2 years after the commencement of the Act. The implementation of the new services are given to the Decision Support Service, (https://www.decisionsupportservice.ie) under the directorship of Aine Flynn. From a webinar I attended recently it was suggested that the Act will be commenced next summer 2022.
All this seems very positive, it is well past the time that people with disabilities got to make their own decisions , and that their needs and wants becomes essential in any decisions take for or about them. It is badly needed and I welcome it very much.
But--(you knew there was a but coming, didn't you?) the Act seems to completely ignore that some people have no capacity to take any decision for themselves. Many profoundly disabled people have no language or communication skills. The can not use sign language or communication aids. They have no capacity to decide what they want for dinner or what clothes they want to wear, and if they have a preference they have no way of telling us what it is.They have no understanding about bills and banks and shopping or money or most things the rest of us takes decisions about several times every days.
When the act gets commenced, it will be required that anybody who wants to be a decision making representative go to court to be appointed. The District Court is the suggested court, and this will obviously be much cheaper than the High Court.
If no close relatives or carers are available to become a decision maker, the commission proposes the setting up of a panel of suitable people to do this job. When we inquired about the kind of people would be suitable, it was strongly implied it would be legal personnel. I'm not sure if a legal person is the best suited to make decisions on my son or daughter's behalf, but that is the suggestion.
The work would involve taking decisions through the year as necessary, and at the end of the year a report will need to be filled in. It is not stated how the report has to be filled in...will it be a
short form saying I've done my best? (That would be handy for the person
doing the co-decisions, but hardly fair or safe for the person needing
the assistance.) Will it be a long, detailed form taking several hours to fill in? And who is going to go through the forms to make sure they are a real and accurate depiction of what work the Decision Maker has been doing? Who is going to pay the fees for doing this office work?
There does not seem to be any provision in the act about who is going to pay for all the expenses involved in going to court, and for the work during the year. It says it will be paid for out of the estate of the person who needs the decision making assistance. It also says the same system will be used to pay for expenses to the decision making assistants/representatives.Well, from experience most people with an intellectual disability have very little 'estate'. A lot of the applications to the courts for this cohort is likely to be parents and/or siblings. So is it going to be family and carers who will pay for it? Minister Rabbitte has stated that nobody will miss out because of lack of funding, but it would be nice to see an actual plan for how it will be funded.
It was 'implied' at a recent webinar that if parents/carers was doing the work, they would not be paid, but anybody from the (legal) panel would be paid...from somewhere! It seems likely that the State has once again decided that carers and families can be depended on to take on even more work and responsibilities without any recompense.
In conclusion: I am all in favour of the new act, in fact I'm desperate for it to be commenced as soon as possible. But I DO think there are several bits of it that has not been well thought out, and I worry it will be like the Disability Act 2005. That Act was pushed through against very strong protests from the Disability Organisation, and has turned out to be one of the most toothless, useless bits of legislation on the Statute book.
This new Act is seriously needed, but let us try to get it right first time this time!
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