MHCAA warmly welcomes Wendy Groot as the Acting EO of MHCAA. Please redirect all mail to firstname.lastname@example.org or phone 0437 010 934.
The introduction of the National Disability Insurance Scheme (NDIS) commenced in July 2013.
The NDIS has been broadly welcomed by the mental health sector. The scheme offers increased supports to people with a mental illness. The NDIS also provides some degree of support to the care giving role.
However, there are a number of concerns about how it will operate in practice for people with a psychosocial disability, and the effect it will have on their families and carers.
This policy brief by MHCAA contains recommendations on how to involve carers and family members in the NDIS.
23 May 2014
Mental Health Carers Arafmi Australia is concerned that families and others voluntarily caring for people with mental illness will be adversely affected by the new budget.
Carers and families supporting a loved one with mental illness already have difficulties meeting every day expenses due to a decrease in income and meeting the extra costs connected with their caring role.
Instigating a co-payment for GP visits will place further obstacles to receiving mental health and psychical health treatment through GP clinics for carers and people with a mental illness. Ultimately, the GP co-payment removes the safety net of our compulsory, universal, health insurance scheme, based on the principle of equal access for all Australians.
Jonathan Harms, CEO of Arafmi NSW, which provides a range of services to families, carers and friends of people with a mental illness across WA, agrees stating, “The families and carers of such people already have to cover the many gaps in our mental health system, and suffer their own financial disadvantages when their caring role reduces or stops them getting paid work.”
Mike Seward, the Executive Director of Arafmi in WA said, “In Australia General Practitioners are the gatekeepers for the whole health system. Making it more difficult for often poor and disadvantaged people with mental illnesses to see a GP means fewer people with mental illnesses will be treated.”
Keeping the current system of ‘universal health care for all’ will support timely and effective access to GP clinics. It will support the use of GP services as a first point of contact and will decrease the probability of people being hospitalised with an avoidable conditions. At the very least, those brave enough to seek help from a GP for a mental health condition shouldn’t be prevented from doing so, due to the unaffordable accumulative cost of co-payments.
Mr Harms concluded, “We urge the government and the Senate to consider these matters carefully before making any decision about the imposition of these charges on already vulnerable and disenfranchised members of our community.”
About Mental Health Carers ARAFMI Australia (MHCAA)
Mental Health Carers ARAFMI Australia’s mission is to represent at national level the interests of ARAFMI groups throughout Australia and the needs and concerns of their constituency – families and others voluntarily caring for people with mental illness.
MHCAA member agencies are the leading mental health carer support agencies across Australia. They provide specialist mental health support to families, carers and their friends. Support includes: linking people to other carers who can offer face to face peer support, education services with other carers, and advocacy services which assist individuals to identify and find solutions to their challenges.
For further information go to www.arafmiaustralia.asn.au or contact Jane Henty, Executive Officer on 0405678983 or (03) 9457 7130 or email email@example.com
ARAFMI Australia is currently seeking personal stories from mental health carers for their website ‘My National Voice’.
The ‘My National Voice’ website raises awareness of carer issues through publishing personal stories online, and collating these stories for national advocacy initiatives.
The website is currently being developed and we are planning to launch it mid this year. For more information; see the attached Fact Sheet or contact Jane Henty on firstname.lastname@example.org or call (03) 9457 7130.
Subsequently we will discuss with you the next steps of writing your story. You may be anonymous if you wish.
Stories can cover a wide range of themes and experiences, and are not limited to any particular topic. In addition to general personal stories about caring, we are also seeking stories from carers about their experience of the NDIS in the Hunter region of NSW.
Excerpt from Mental Health Council of Australia’s ‘Perspectives: Mental Health & Wellbeing in Australia’ by Jane Henty
In this article, the term carer refers to people who provide unpaid, practical and emotional support to a person with mental health issues, such as relatives, partners, friends or neighbours. A carer may or may not live with the person they support and the do have to be identified by the individual with mental health issues to be their carer (Clements: 1996).
The Mental Health Council of Australia’s 2012 Mental Health Carers Report: Recognition and Respect was an insight into the lives of some of the most dedicated yet vulnerable members of our community, namely mental health carers. Carers provide help, understanding, guidance, support and a financial safety net for people with a mental illness. This can take its toll financially, emotionally and physically. As a carer in the report says, ‘The support services provide all the contact details to the consumer, but who can the carer call when they are worried and afraid? The concern that when your child goes away they may not come back, or nights when you lay awake with worry that they might not be alive the next morning.’
It is critical that we listen to, and document, the views and experiences of carers.
Shift in emphasis
Asylums have been closed for 30 years. Subsequently the emphasis of mental healthcare has shifted to home-based and community care, with families and carers taking increased responsibility in caring roles, often with minimal support from communities or services. This can lead to carers feeling (and being) swamped in a pattern of day-to-day survival, with little hope for the future.
Supporting someone with a mental illness has a negative impact on the health and wellbeing of carers. In 2007, carers were found to have the lowest wellbeing of any large group recorded by the Australian Unity Wellbeing Index (Cummins and Hughes: 2007). The National Mental Health Carer and Consumer Forum in 2011 linked poor carer wellbeing to: the episodic nature of mental illness; the behaviours that can be associated with mental illness; the lack of community recovery-based services and supports for people with mental illness; and lack of appropriate accommodation for people with a mental illness.
Advocates have therefore been calling for improved community support for family members caring for their loved ones with a mental illness. It is crucial that carers receive knowledge and moral and peer support. A carer has emphasised the importance of carer support: ‘Mental illness was completely new to me and I had to learn as much as I could whilst (sic) dealing with my sick son. Education and support was provided at a time of despair and bewilderment.’ (ARAFEMI: 2007).
However, there is still inadequate support for carers. Sharing my professional journey illustrates some of the typical barriers and shifts across the sector.
Commencing as a graduate psychiatric nurse in 2005 in a Melbourne hospital, I completed four rotations in the acute psychiatric wards, which was a comprehensive crash course in psychiatric nursing. The psychiatric wards were always full. There were always patient admissions, patient discharges and forms to fill out.
Families entered and left the wards at the periphery of our vision. As a nurse, the focus was on a timetable of medications, meals and risk assessments, which would be periodically interrupted by difficult situations, such as a patient absconding or creating a disturbance.
As a nurse, I was sympathetic and concerned for families’ needs.
However, timetables and processes sometimes got in the way. I think back to how a mother looked at me in concern when I told her she could take her son on leave from the ward. Possibly her concern related to the nature of the illness, or the treatment had not been explained to her, or she was worried that something may happen while he was in her care. However, she could not say anything in front of her son and I did not intervene. His leave papers were signed by the head psychiatrist, so he left. A more family inclusive approach to the leave arrangements would have supported the mother in her caring role. At the time, the ward culture and work expectations made family inclusion challenging.
Part of the barrier that is often cited within workplaces is whether carer and family involvement in consumers’ care and treatment is core business. Since the introduction of the National Standards for Mental Health Services in 1996, it is required to involve consumers and carers in mental health treatment. This imperative has arisen from clear evidence that families, carers and friends are the largest providers of care for people living with mental illness in Australia and that inclusion in care and treatment leads to greater health outcomes for consumers (Falloon: 1998). However, families have often continued to be marginalised and excluded from participating in their loved ones’ care (Lakeman: 2008, 203-11). This is concerning given that ‘fifty to ninety per cent of the chronically mentally ill live with their relatives following acute psychiatric treatment’ (Lauber et al: 2003, 285–289).
After a couple of years of nursing I turned my attention to mental health community rehabilitation and recovery. I wanted to work in the community where recovery from mental illnessw as the focus of care. I started working for ARAFEMI Victoria as an outreach worker. In this program, families were more central to the consumer’s care. I entered into families’ private lives, learnt about their hopes and fears, and heard their stories of coming to terms with their loved one having a mental illness. I generally heard similar comments from families: how can this have happened, could I have prevented it, what can I do?
Physical and emotional exhaustion, chronic stress, depression and grief are not unusual among family members. Social isolation and low self-esteem, economic losses, decreased life opportunities, and difficulties accessing effective treatment and support services add to the pressures that carers and families face. The lack of support and information about the illness, management and services compounds these feelings of powerlessness and frustration.
A deepening respect and commitment for families and carers has led to my role as Executive Officer of Mental Health Carers Arafmi Australia. This organisation represents at national level the interests of the needs and concerns of its members and constituency – families and others voluntarily caring for people with mental illness
Attending a Carers Conference held in Perth in 2012, I heard the ABC sports presenter and broadcaster, Karen Tighe, share her story about being a carer. She had cared for her husband, Glenn Mitchell, also a sports broadcaster, during his depressive illness. The pain, stress, anxiety and stigma she described brought the audience to tears. I began to really understand howisolating and painful being a carer can be and that often carers are crying out for help, with no-one listening.
We can decide as a country that we are going to ignore the needs of carers such as Karen, and continue to focus on diverting most government revenue into acute psychiatric beds. The majority of national mental health expenditure in 2010-11 went to public hospital services for admitted consumers, at $1.8 billion, followed by community mental healthcare services at $1.6 billion (AIHW: 2012).
Or we can choose to lead the world in mental health treatment and support by:
And most importantly, we need to give carers hope. We can do this by using personal experience through peer support, and building carers’ skills though information, education and support. A focus on empowerment, hope and self-determination is central to recovery from mental illness for both consumers and carers. The choice is with the policy makers, the government, individual services and the community.
So Australia, what are we going to do?
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