Culture Lecture 2: Supported Decision-Making Ethics of Conducting Disability Research (PDF)

Scientific Foundations of Psychology PSY1SFP Culture Lecture 2: Supported Decisionmaking: The Ethics Of Conducting Research With People With Disability ADDITIONAL RESOURCES Victorian Mental Health and Wellbeing https://www.health.vic.gov.au/mental-health-andwellbeing-act-handbook/supported-decision-...

Scientific Foundations of Psychology PSY1SFP Culture Lecture 2: Supported Decisionmaking: The Ethics Of Conducting Research With People With Disability ADDITIONAL RESOURCES Victorian Mental Health and Wellbeing https://www.health.vic.gov.au/mental-health-andwellbeing-act-handbook/supported-decision-making Office of the Public Advocate https://www.publicadvocate.vic.gov.au https://www.publicadvocate.vic.gov.au/opavolunteers/independent-third-persons ACT/NSW Toolkit https://adacas.org.au https://support-my-decision.org.au/making-decisions/ The guiding principles LECTURE OUTLINE Developing supported decision-making arrangements Designing Participant Information and Consent materials Document: Report of Special Rapporteur on the rights of persons with disabilities (2018) Key points of Article 12: UN HUMAN RIGHTS COUNCIL: THE GUIDING PRINCIPLES We must recognize universal legal capacity for all persons with disabilities, including for those requiring more intensive support The recognition of universal legal capacity for all persons with disabilities strongly influences the exercise of all other human rights and fundamental freedoms We must abolish and prohibit all regimes of substituted decisionmaking We must develop supported decision-making arrangements of varying types and intensity, including informal and formal support arrangements FUNDAMENTAL PRINCIPLES OF SUPPORTED DECISION-MAKING Autonomy: Inclusion: Recognizing and respecting the individual's right to make decisions that affect their own lives, in accordance with their own values, preferences, and goals. Ensuring that individuals are actively involved in the decision-making process and have opportunities to participate in decisions that impact their lives, regardless of their abilities or disabilities. Dignity: Upholding the inherent worth and dignity of every person, regardless of their cognitive or physical abilities, and treating them with respect, fairness, and empathy. Empowerment: Providing individuals with the support and tools they need to exercise their rights, make informed choices, and assert control over their own lives. Flexibility: Recognizing that supported decision-making approaches should be tailored to the unique needs, preferences, and circumstances of each individual, and that the level and type of support may vary over time. WHERE DOES THE FRAMEWORK APPLY? Healthcare: Individuals may require support in making decisions about their medical treatment, including informed consent for procedures, treatment options, and end-of-life care. Education: Students with disabilities may need assistance in making decisions related to their education, such as choosing courses, participating in extracurricular activities, and planning for post-secondary education or vocational training. Legal Proceedings: Individuals involved in legal proceedings, such as guardianship or mental health hearings, may benefit from support in understanding their rights, communicating their preferences, and participating in decision-making processes. Financial Matters: People with disabilities may require support in managing their finances, including budgeting, banking, paying bills, and making investments. Social Services: Individuals accessing social services and supports may need assistance in making decisions about housing, employment, transportation, and accessing community resources. Everyday Life: Supported decision-making can apply to various aspects of daily life, including personal care, relationships, recreational activities, and leisure pursuits. UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES (UNCRPD) Legal Capacity Autonomy and Inclusion Respect for Diversity and Dignity NonDiscrimination and Equality Best Interests and Will and Preferences Accessibility Freedom from Coercion and Abuse LEGAL CAPACITY The ability of individuals to make decisions and take actions that have legal significance e.g. contracts, making financial transactions, and consenting to medical treatment. Also participation in research Encompasses both the capacity to understand relevant information and the ability to appreciate the consequences of one's decisions. In the context of supported decision-making, legal capacity is understood as the ability of individuals with disabilities to exercise their rights and responsibilities on an equal basis with others, with appropriate support and accommodations as needed. Recognizes that individuals may require varying levels of support to exercise their legal capacity effectively, depending on their individual circumstances and needs. The goal is to ensure that individuals with disabilities are empowered to make decisions that affect their lives to the greatest extent possible, while also safeguarding their rights and best interests. RESEARCH ETHICS: IMPORTANT PRINCIPLES Respect for autonomy The right to choose to participate or not Informed consent Knowing what is going to happen: tasks, time, foreseeable impact Beneficence Has benefit for the individual involved Supported decision making with individuals with intellectual disability/cognitive impairment How do we assist people to consent or decline research involvement? CONTEXTUAL EXAMPLE Supported decision maker Sophistication of documentation language How do we present materials ensure consent is INFORMED? Accessibility of documentation Verbal and non-verbal consent Step 1 Establish if the person with disability wants or needs a support person to assist them DEVELOPING SUPPORTED DECISIONMAKING ARRANGEMENTS Step 2 Establish who the person with disability wants supporting them Hurdles to Step 2 People will not always have the ability to communicate who they would like There are time where you can not find someone within the persons community that can support them SUPPORTED DECISION MAKER ROLE This role is voluntary Person must free of conflicts Person must be informed of the nature of their role https://www.publicadvocate.vic.gov.au/opa-volunteers/independent-third-persons La Trobe Support For Decision Making Practice Framework Bigby, C., Douglas, J., & Vassallo, S. (2019). The La Trobe Support for Decision Making Practice Framework. An online learning resource. Retrieved from: www.supportfordecisionmakingresource.com.au Supported decision maker role Principles Knowing the person Understanding the nature of the decision Bigby, C., Douglas, J., & Vassallo, S. (2019). The La Trobe Support for Decision Making Practice Framework. An online learning resource. Retrieved from: www.supportfordecisionmakingresource.com.au DESIGNING PARTICIPANT INFORMATION AND CONSENT MATERIALS Courtesy Dr Alyse Brown Check accessibility Courtesy Dr Alyse Brown Courtesy Dr Alyse Brown The people involved in this Project at La Trobe University are….. Dr Mel Murphy Dr Todd Pickering Mr Brian Ignacio Courtesy Dr Alyse Brown Courtesy Dr Alyse Brown One image presented at a time Information is presented in 3 ways 1. Visually 2. Verbally 3. Written Cards are laminated with low gloss Max of 3 response options Courtesy Dr Alyse Brown These cards are laid out before the participants, and they can respond by: 1. pointing 2. Verbally Images are visually simple Courtesy Dr Alyse Brown Supported decision making aims to replace substituted decision making UN framework and relevant state Acts intended to support and protect the rights of the individual to have agency over their choices SUMMARY In research contexts, informed consent is required thus materials must be designed to ensure this Supported decision makers have a role in advocating for the individuals wishes/choice Researchers and ALL professionals should act in accordance with the UN Guidelines to respect the rights and autonomy of the individual. WEEK 5 LECTURE Dr Matt Ruby Understanding The Relationship Between Culture and Psychology Next Week Mid-semester break (return 8th April)