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A consistent theme through conversations and consultations held with carers across Tasmania is that carers feel that the general community, and those in decision making roles, have limited understanding of a carer’s day to day experience and how hard this can be. Feedback suggests a carer’s experience needs to be heard in a carer’s own words. Suggestions for the best ways to achieve this were diverse and ranged from those in decision making roles having face to face contact with carers, through to carer participation at all levels of government service provision.
Discussions with carers considered the meaning of ‘awareness’ and ‘recognition’. Carers understood ‘awareness’ to be that the majority of the community would have a general understanding about what it meant to be an unpaid carer. Most carers felt that ‘recognition’ was not a matter of wanting a ‘pat on the back’, because that is not a carer’s motivation in providing care. Carers saw ‘recognition’ as meaning that the community and Government departments would routinely identify them. Once identified carers then want acknowledgement for the role they play, and inclusion as an important member of a team providing care in the community and to some of Tasmania’s most vulnerable people.
Carers know there can be challenges in this, particularly when the person they care for feels a strong need for privacy; does not acknowledge or understand the significant role the carer is performing; and does not give consent for their involvement when asked. While having full respect and understanding for the challenges this can pose, carers would still like mechanisms for working together with Government services for the benefit of the person who they care for. Carers would like respect and understanding for their role regardless, and an understanding of the consequences providing such care can have on the carer.
Carers reported that their needs and those of the person they care for are inextricably linked. Often a carer’s first thought when asked about their needs, is that if the person they care for was well supported, their needs would be minimal. That said, carers indicated they would ideally like Government departments to respond to a carer’s needs separate from the needs of the person they care for in order to sustain them in their roles. The need for more respite services was mentioned in every consultation. There were some comments from carers that many community members do not feel comfortable identifying as a carer. Reasons cited included stigma, mistrust of service providers, and not wanting the person they care for to feel uncomfortable or ashamed of their need for their care. One carer explained that separating people into the carer and person being cared for suggests an unequal relationship.
While understanding in the community was definitely seen as a need, most carers thought that increasing understanding within Government was a good first goal, and that this would flow onto the community. Carers saw an opportunity for Government to lead by example, by ensuring routine and consistent procedures across Government departments for identifying and supporting carers.
Throughout the consultation carers generally expressed a strong desire to connect and be heard by Government. They felt that information and opportunities for input were limited.
Carers would like to contribute to decision making in all areas of Government that affect them, and would like carer involvement to be mandated on representative bodies, groups or committees that are convened on matters impacting on carers. Many carers who attended said they would be interested, willing and comfortable to participate on working groups, with the caveat that they face transport and respite barriers that may require Government support.
Submissions were received from MHCTas and SASS.
MHCTas undertook consultations with members and presented a submission outlining the challenges facing mental health carers and recommending government action to address the issues identified during consultations.
Mental health carers wanted to see an increase in awareness of mental health and mental health carers in schools, hospitals and the broader community. They felt that a cultural change is needed in Government around the value of carers and what they can bring to the table in contributing to better outcomes for the people who receive their care. They suggested that formal protocols be put in place in Government departments and services for how to engage with, treat and involve carers in decision making. MHCTas reported that mental health carers wanted to see engagement and service approaches that were flexible, not ‘one size fits all’ models; and that many people want to talk face to face with staff if they need assistance. They felt staff needed to be easily accessible and able to respond to any issue with experience, sensitivity, confidentially, and when they didn’t have the answers – make the time to find out.
MHCTas recommends that Government give consideration to ensuring that adequate resources are allocated to carer organisations and broader government service systems that carers frequently access. It also recommended that more resources be provided to address needs frequently identified in the mental health carer community, such as education and training, capacity building for carers to engage with government, and support for carers to gain employment.
The SASS submission focused primarily on the needs of grandparents who are the primary carers for their grandchildren, as the group of carers with whom SASS has most interaction. SASS highlighted that grandchildren in the care of their grandparents can often be in their care due to a range of complex factors including parental drug or alcohol issues, child neglect, sexual abuse, parent’s mental illness and family violence – which can lead to trauma issues for the children.
SASS recommended that grandparent carers need help, support and resources to identify and manage the signs of trauma, and resultant problematic behaviour. The submission also highlighted that grandparent carers are now facing challenges associated with online safety and technology abuse, and may need additional and tailored support and education in how to engage with technology and social media.