“Who is your next of kin?” That’s something that queer people have perhaps had to think about more often than our straight counterparts.
Our birth families haven’t always been our families of choice. I’m sure you’ll be as surprised as I was to learn that ‘next of kin’ has no legal meaning or weight, it only signifies who will be contacted in case of an emergency. Our named ‘next of kin’ actually have no rights whatsoever. Suzy Byrne was also very surprised to learn this .
Byrne has been involved in community work and has campaigned on disability and equality issues for 30 years. She is a regional manager for the National Advocacy Service for People with Disabilities which provides professional representative advocacy for disabled individuals who may need support in decision making and accessing rights. Suzy is also a Director of Iarnród Éireann and a chairperson of the Irish Council of Civil Liberties.
In 2015, when she regained consciousness after emergency surgery in intensive care and her partner was not with her, Suzy learned the hard way that even though her partner of seven years, Karen, was named as her ‘next of kin’ on hospital forms, Karen could get no information about what was happening to Suzy. “Was she even still alive?” No one would tell her. It was only the intervention of Suzy’s father on Karen’s behalf that got her access.
“Eventually my father (who I had not mentioned at any stage in my hospital treatment or admission) got access for my partner simply by stating his relationship to me – rather than anything I had indicated previously in terms of my wishes. In the previous eight years, I had worked to support other disabled people in decision-making, sometimes in relation to medical decisions and who they wished to support them in those situations. I had witnessed people who had capacity and knowledge to make decisions being dismissed by doctors and nurses due to their disability. This situation also exists in banking, legal matters and other engagement with professionals – even when someone tries to enforce their rights to a refund as a consumer. Now here I was in a position that my wishes were not listened to and hospital staff were making decisions on my behalf without my consent because they could. I should not have been surprised but I was.” Suzy and Karen were well able to advocate for themselves but even so this experience became a nightmare for them. Suzy’s expressed wishes, having been sought by the medical professionals caring for her, were then ignored. Instead, they listened to her father who she’s not lived with for decades.
This paternalistic attitude about who can speak for us is firmly rooted in Ireland’s archaic system of Wardship. It is based on the Lunacy Act of 1871 and runs contrary to our human rights obligations. Thankfully, Ireland was obliged by its intention to ratify the United Nations Convention on the Rights of Persons with Disabilities to fix this Dickensian system and replace it with a system by which we can nominate who we want to speak for us if we cannot speak for ourselves. New legislation was passed in 2015 and, after an eight year delay, is about to be commenced.
The Assisted Decision-Making Capacity Act (ADMCA), passed in 2015 repeals The Lunacy Act. Importantly, the ADMCA is based on a set of defined principles. There are nine principles which are all bedded in human rights, they are;
• Presume every person has the capacity to make decisions about their life
• Support people as much as possible to make their own decisions
• Don’t assume a person lacks capacity just because of an unwise decision
• Only take action where it is really necessary
• Any action should be the least restriction on a person’s rights and freedoms
• Give effect to the person’s will and preferences
• Consider the views of other people
• Think about how urgent the action is
• Use information appropriately
“Not everybody’s going to need this.. which is right, not everybody should be forced into it either...which is right too, but it’s there if you do need it, and it’ll support and assist many more people than the existing 19th century lunacy legislation which it’s replacing.”
A huge amount of work has been done, over decades and across all concerned sectors in Ireland, to bring this paradigm shift into being. The new system is in place but has not yet been started, and it is more urgently needed than ever.
“People are waiting now, for example right this minute there are people impacted by the Ulster Bank closure who are in a legal limbo because their next of kin cannot close or open a bank account for them without having power of attorney, or they might even have no next of kin.”
A brand new state agency, The Decision Support Service (DSS), has been set up to provide information and support to people about how to use the new system. The DSS will also hold the register of Decision Support Agreements. This new agency is now well resourced and has been engaging with stakeholders. According to the DSS the changes are being generally well received. And they will hopefully finally remove the stress, cost and clumsiness of the existing system.
A challenging consequence of these changes also faces government now; the commencement of the law will require that the existing 2500 Irish people who are currently Wards of Court will have their Wardship reviewed.
“2,500 wards will be reviewed by the High Court and it will be decided as to whether they’ll be transferred over to the ADMCA and have a decision-making representative appointed or will they be discharged from Wardship.
“And there will be people discharged from Wardship because they have capacity to make decisions themselves and do not need someone telling them that they have to have permission every time they want to leave the country, or they’re not allowed to have a bank account or they’re not allowed vote.” For LGBTQ+ people the Assisted Decision Making Capacity Act is of huge importance and of great benefit to us and our families.
“I think it’s the opportunity for formalising what was done informally so that it’s not just you’re hoping the doctor is going to be queer friendly or you hope that the lawyer will understand. People now get a chance, in a more accessible system, to record their wishes and have the support they want in making decisions if they become less able to do so.”
Powerfully, it means that we can now name the person or people who we consider kin and wish to have supporting us in making decisions, not who the state says is our kin, nor who our birth family says is our kin, and we don’t even have to marry someone for them to be recognised. It should have always been this way, and the new decision support system will finally allow our wishes about who can help us with decisions or make decisions on our behalf to be fully respected and recognised.
This new legislation affects all of us even if we never personally avail of it. It changes the culture of care and relationships of care in Ireland. This also has implications for those of us who are carers and those who work in health and social care. It will replace things like Wardship and Power of Attorney with a much more flexible, affordable and usable system.
The new system is complex and detailed. It needs to be. There are three levels of support, and short-medium and long-term options. Because this is such a massive root and branch change, training and education around the new legislation have been ongoing across Ireland in readiness for the commencement.
As Suzy pointed out, our informal queer kinships can now, if we want, have full legal recognition in a more accessible and humane way. This is worth celebrating and also worth taking a moment to remember those of us who were cut off from queer kin, often when we needed our queer kin most. We no longer need to rely on the goodwill of allies. Who we say is our kin will now be fully acknowledged and respected.
You can find out more on the DSS website www.decisionsupportservice.ie
The DSS offers support to both individuals and organisations and will deliver talks and workshops upon request.