The Assisted Decision Making Act: A personal view!

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!

 

Comparing carers and Minister for Health

The Minister of Health had a two page interview a few weeks ago in a few local newspapers. 

 It can best be describe as fawning and he did not seem to be questioned at any stage about his statements. He explains how he is very busy, ‘ I work 100 hours a week, 7 days a week. I also have to be a dad, a husband, a son, a brother and a friend. That makes it 14 hours a day, which sounds very busy…but in truth most carers would be delighted to ‘only’ work 14 hours a day. Most of them are on call for 24 hours every day, that is 168 hours.

 Many get no pay. Some get Carers allowance, a social welfare payment. It is not recognised as a payment for work provided, instead it is a social welfare payment intended to help carers who are poor because they have to care. They earn the massive sum of Eu 220 if you care for one, Eu 330 if you are caring for more. Because it is not a payment for work you are not covered by the present working legislation. So you have no pension rights, no holiday time, no overtime, none of the rights that are looked on as essential by workers in this country. Now I am sure Stephen Donnelly would be willing to do his job for the same pay?

 May I also point out that we all have to wives, husbands, fathers, mothers, sons, daughters, brothers, sisters and friends. That is called being a human. 

The Minister explains how busy he was when he took over the job as Minister, since he lost the secretary general of the Ministry of Health, and the Chief Medical officer had to step aside for a while. May I respectfully point out that every carer in the country was very busy at the time, since the Government had effectively closed all day services for people with disability and for elderly. People were dumped on their families. I don’t like using the term dumped, since it sounds denigrating towards the service users, but it is hard to think of another word to describe what happened. Services were closed overnight, with no guidelines of what to do or for how long the closures would continue. 

From what I can see, no real planning took place over the next 6 months either, which leaves you wondering what was being done in the Department at Health at the time. (if truth be told, there still seems to precious little planning at present too….) 

The Minister points out that he provided funding of 7.8 Million to clear the backlog of Assessment of Needs. This is clearly to be welcomed, since this is the first hurdle that has to be passed by parents of children with special needs. It is an assessment of what services will be needed to give the child the best possible services in order to give them a good start in life. Unfortunately there is no requirement to actually give children access to these services, and that is where the biggest backlog is, and this backlog has grown exponential during the Minister’s reign. In October 2020 the Ombudsman for Children published a report called ‘Unmet Needs’ describing the shortcomings of the present system, fairly scathing about the State’s attitude to provide services to children with special needs.

 In December 2020 Gareth Noble, a well known lawyer within the disability services, speaking before Joint Oireachtas Committee on Children, Disability, Equality and Integration "It is a national scandal that 91% of children do not receive their assessments within the time frame prescribed and mandated by law’’. But instead the government, under this Minister, pulled most therapists working for them out of their work to instead work in the contact tracing. This shows very clearly to me at least the priorities of this Minister. 

Not mentioned in this article is the Minister’s attitude to carers and vaccinations. He has refused to name family carers as a separate group, worthy of vaccination. Instead he say: Family carers are a diverse group, therefore, each individual will be vaccinated in the group that is appropriate to them. Well, any group is diverse, it is the foundation of our view of humanity that we are all different! Over 85s is a diverse group, nurses are a diverse groups, Ministers are a diverse group even! It is a nonsensical comment that seems designed to hide the Minister’s lack of understanding of what family carers are and do. At an earlier date he mentioned that the people we care for will be vaccinated, so we don’t have to be. That completely ignores the fact that not all family carers care for elderly people. Some of us care for children, and vaccines have not been approved for children. Others care for people with severe and profound disabilities and many of them may not be able to ever have a vaccine.

What carers want and needs, is recognition as vital workers in the present-day Health service. Instead we are treated as expendable resources that can be ignored and abused!

Everything you thought you knew about carers.....

I was listening to the debate the other day in the Dail Eireann (Irish Government) about the Sinn Fein  (Irish party) motion on family carers. 

Whilst I welcome this initiative and those that supported the motion it is staggering how much people can misunderstand the role and work of family carers. For a start it seems to be an idea that carers are people who care for elderly people suffering with dementia. 

Well. some of us are. A lot more care for people with disabilities of varying degrees, from birth to death of either us or the people we care for. Some of us care for family members who have been incapacitated through accidents or diseases, spouses , children, aunts and uncles or in some cases friends and neighbours. Some of us care for a very short time, others for many decades. Some of us care because we want to. Some of us care because we have no options. 

Funnily enough I know of nobody who cares because of the pay and conditions. Maybe not so strange when you consider that; pay: Euro 220 a week if you are poor enough, conditions: none. We are not entitled to any holidays, holiday pay, overtime, sick pay and many of us will not be entitled to contributory pensions,…I could continue, but you get the point.

 There always seems to be this notion that we are ‘different’ than other people, that somehow we are ‘better’, ‘kinder’, more ‘caring’, more ‘resilient’. Let me declare here and now, we are exactly the same as you. We are good, bad, strong, weak, silly, clever, capable, incapable, funny, serious, just like you. We are not selected because we are ‘special’. Telling us that we are ‘special’ is condescending and unhelpful. Assuming that we are ‘special’ gives you the power to imagine that we are finding the hardships of caring less difficult than you would. It makes it easier for you to imagine that we all do the work we do because we want to, not because in many cases we are forced to do it without adequate supports. No one should have to care alone! 

The reality is we ARE forced to care alone, because of the lack of investment in services and supports in this country, both in disability and services for the elderly. People often assume that we are ‘being looked after’ and that we are not as bad off as the media says when in fact we are much worse off! We have no rights, and the people we care for have no rights.  The Disability Act 2005 is one of the worst scams inflicted on the disability, and on people caring for people with disabilities, ever in this country. It is not a right based approach to disability, it is an accountant’s approach. (no disrespect to accountants!). It is an act predicated on the State deciding if it has enough money to give people with disabilities any rights. You have an entitlement, but only if state thinks it can afford to give it to you! 

All we want is recognition and support for the work we do. We want the respect due to capable co-workers within the health services, we want decent working conditions. We do not want empty praise and crocodile tears. Several weeks ago the Minister for Health said that carers are a group too diverse to vaccinate. Today he implied that we are all the same. We ARE a diverse group, but the State prefers to see us as all the same, poor downtrodden people that can be pitied, praised and then ignored! We cannot and will not accept this anymore – as one political representative said in the Dail today “we are vital but not valued”!