It is useful to consider the findings of the Royal Commission on Abuse in Care in New Zealand (2024), because caregivers and whānau / family involved in supported decision-making with their FASD person can learn from what occurred.
The Royal Commission strongly advocated for the implementation of ‘supported decision-making’ practices, emphasising that people in care should have the right to access support to make decisions affecting their lives, while respecting their autonomy and agency, particularly for those with disabilities or who may require additional assistance due to their circumstances; this included recognising the importance of culturally appropriate support and involving whānau in the decision-making process.
Key points from the Commission's findings on supported decision-making included:
Right to participate
People in care should have the same rights as others to make decisions affecting them, with access to appropriate support mechanisms when needed.
Culturally sensitive support
Support should be provided in a culturally sensitive manner, taking into account the unique needs and perspectives of Māori and other diverse communities.
Whānau involvement
Whānau should be actively involved in decision-making processes, respecting their role as primary caregivers and advocates.
Assessment of needs
Proper assessment of individuals' needs and capabilities should be conducted to determine the appropriate level of support required for decision-making.
Empowerment
Supported decision-making should aim to empower individuals in care to make choices aligned with their wishes and values.
It is equally important to note their findings on what did not go well. A key criticism of the Royal Commission was that supported decision-making was often not adequately implemented. This led to situations where vulnerable individuals in care were not given sufficient agency in decisions affecting their lives, sometimes resulting in neglect or abuse due to a lack of understanding of their needs and preferences.
Key points of criticism:
Lack of care
The evidence suggested that many supported decision-makers did not adequately care about the needs and well-being of disabled people in their care, often failing to prioritise their best interests and allowing abuse to occur due to systemic issues and a lack of understanding of disability needs.
Capacity assessment
The Commission found that assessments to determine individuals' decision-making capacity were often inadequate, leading to situations where people were deemed unable to make choices for themselves when they may have been able to with appropriate support.
Paternalistic approaches
Care providers sometimes made decisions on behalf of individuals without adequately considering their input, perpetuating a power imbalance and undermining their autonomy.
Discriminatory attitudes
Systemic ableist attitudes within care institutions often resulted in disabled individuals being seen as less credible or having their needs disregarded.
Inadequate training
Staff working in care settings may not have received sufficient training on how to implement supported decision-making effectively, leading to misunderstandings and poor practice.
Cultural considerations
The Commission highlighted concerns that supported decision-making practices may not have adequately taken into account the cultural needs and perspectives of individuals from diverse backgrounds.
Impact of these criticisms:
Increased vulnerability to neglect or abuse
When individuals are not properly supported in decision-making, they are more susceptible to experiencing abuse or neglect within care settings.
Lack of agency and control
Without adequate supported decision-making, individuals may feel powerless to influence their own lives and care plans.
It is important that any person or agency acting as a supported decision-maker has a real interest in the disabled person and in them achieving their best life. Currently this role is more likely to be best filled by the caregiver or a whānau│family member until there is the option of professional people taking on these roles.
