Revision of a 32-year-old law designed to protect the personal and property rights of people, including people with disabilities, cannot come soon enough, local advocates say.
The Law on the Protection of Human Rights and Property is under review by the New Zealand Legal Commission.
The law allows people to apply to family court to be appointed as social guardian and / or asset manager so that decisions can be made in the best interest of the person who is declared incapable.
The revised law will prevent people with intellectual disabilities from being exploited, community members say.
In her own life, and in 40 years of working in the disability sector, Gisborne resident Colene Herbert has said she doesn’t believe the law is “good enough for people with developmental disabilities”.
She said she wanted the law to be strengthened.
âFrom what I understand, the law currently requires the approval of a general practitioner to determine a person’s ability to make decisions.
âI don’t think it’s tough enough.
âPersonally, I don’t think the GPs or DHB here have enough knowledge to make the right decision, which is to determine the capacity.
“And I don’t think the law supports a decent process.”
Ms Herbert said families sometimes have low levels of health literacy, so they don’t really explore the nuances needed to determine a person’s ability.
She wants the law to be strengthened by this review to ensure that family members and other important people who seek to control a person’s ability to make decisions cannot take advantage of their disabled family member.
There must be enough eyes, she said, and the authorities involved in her process “so that nothing untoward happens.”
Ms Herbert’s brother, who died in 2011, had an intellectual disability.
She said he was born at a time “when my mother was told to put her child in an institution and to move on with her life.” In other words, forget it.
âBeing a Maori, she refused to do this. We grew up with an older brother who had an intellectual disability and who was part of our life.
âWe pleaded for him when we needed him. He stayed with the whÄnau but it was not the experience of many people at that time.
âAs far as my brother is concerned, we have never applied the Law on the Protection of Human Rights and Property (PPP & R) as a whÄnau. We knew that if we talked to him and explained things to him in plain language, he would understand.
“There was never anything where we had to replace him – he was always part of the decision.”
Ms Herbert said the Law Commission should also consult with Maori with disabilities.
âThey have to present the review to the people because this bill is important.
“I don’t think that many Maori have the literacy and knowledge around PPP & Rs and how they can be applied (misused / used).”
Hauora TairÄwhiti CEO Jim Green said it is standard practice for all healthcare professionals to have whanaungatanga, whakawhanaungatanga and tikanga MÄori in their approach when providing care to their patients.
âI have no doubts that the healthcare professionals at Hauora TairÄwhiti are competent in terms of the work they do – all aspects of it.
âWe have systems and processes in place to support them, checks and balances so that they can do it.
âI’m also confident that most of these decisions are made as a team. In terms of doing assessments around people, various members of the clinical team are involved in the process, as opposed to a clinician signing off a piece of paper.
âThese systems are put in place to allow all factors to be considered before making decisions about a person’s adult decision-making capacity.
“We try to make as informed a decision as possible, we explain what is happening and why it is happening to the patient in plain language so that they can understand the care options available to them.”
Gisborne Alzheimer’s Society director Tracy Robinson said the PPP & R law was long overdue for reform for people with dementia.
âIt does not in any way recognize the needs of people with dementia,â she said.
âThe number of people with dementia is increasing rapidly.
“When the law was drafted in 1989, there would have been less than 60,000 people with dementia in New Zealand while there are now almost 70,000 and by 2030 that number is expected to rise to 99 245. “
Ms Robinson said people with dementia deserve their human rights to be respected and that is not the case “in current law” unless they have an enduring power of attorney.
Ms Robinson said the law should “definitively” examine surveillance situations in which people’s ability to make decisions might have been limited, “so that they are protected from abuse by greedy or selfish friends or family. “.
This included the legal system, “which often operates at a level that would resemble extortion to the rest of us who are able to make decisions and know when to say no and withdraw from certain conversations or agreements.”
New Zealand Law Commissioner Geof Shirtcliffe said the Adult Decision-Making Act covers a wide variety of decisions “that we can all face in our lifetimes.”
âThis law affects a wide range of people, and particularly affects communities with disabilities.
âThe key law in this area has not been revised for decades. There were some important developments around this time. Our attitudes towards disability have changed and Aotearoa New Zealand is committed to implementing the United Nations Convention on the Rights of Persons with Disabilities. Additionally, as our population ages, a growing proportion of New Zealanders will need help making decisions about their lives. In addition, our law may not be compatible with the perspectives of te ao MÄori, te Tiriti o Waitangi and the rights of tÄngata whaikaha MÄori (Maori disabled people), their whÄnau, hapÅ« and iwi.
IHC lawyer Shara Turner said she thought it was great that a review was taking place. “It dates from 1989 and is obsolete.”
She was on the Law Commission when the terms of reference for the review were decided.
IHC is New Zealand’s leading service provider for people with intellectual disabilities.
Their national advocacy service focuses on systemic advocacy such as changing laws, policies and governance, health reforms for people with intellectual disabilities, education and housing.
âAt IHC we hear about issues regarding people with abilities who are put under guardianship (welfare guardian) by law and sometimes these people have been exploited,â Ms. Turner said.
âWe worked hard enough to help them out of this situation, just like the Britney Spears situation where her father was in control even though she was able to make her own decisions in life.
âWe have less glamorous versions of this in New Zealand. The law is in dire need of updating and we need to move from substitute decision-making to supported decision-making where we focus as much as possible on well-being and inclusion of the anybody.
NOT GOOD ENOUGH: Colene Herbert says she doesn’t believe the law as it currently exists is good enough for people with developmental disabilities. Photo by Rebecca Grunwell
NEEDED: Tracy Robinson, director of the Gisborne Alzheimer’s Society, says the Human Rights and Property Protection Act is long overdue to be reformed for people with dementia. Photo by Liam Clayton