Participation and inclusion key for neglected carers


These days, growing numbers of people are beginning to understand and respond to the needs of people with mental illness or disability, and are taking steps towards a more inclusive community.

CarersYet while some inclusion policies explicitly provide for people with disability or mental illness, caregivers are not necessarily accommodated.

This is a significant oversight considering that caregivers are at a much higher risk of mental illness themselves. People in a caregiving role experience mental disorders between one and a half and two times the rate of the general population. Depression and anxiety are common ailments.

Many caregivers operate with a baseline level of stress not understood by most in the broader community. This can be exacerbated by a variety of factors.

Practical factors include time pressures because of the need to prepare, monitor and respond to the needs of another person throughout the day. Physical demands may include lifting, disrupted sleep or constant movement if caring for a very active person. Emotional strains could include chronic sorrow, ongoing medical issues, or a lack of support.

Stress is also aggravated by the emotional demands of 'keeping it together' in a society that prefers not to see vulnerability, and does not always seek to understand those who may be struggling in some way. In our culture, people tend to neither ask for nor offer assistance, particularly where disability or mental illness may be involved. These factors combine into an additional social loss for those involved.

Finances already take a hit, with treatment, equipment and special arrangements all significantly impacting the hip pocket. Opportunities are lost as outings, entertainment, education and other purposeful activities are forfeited, because life with significant caring responsibilities can be complicated.

Such challenges underpin carers' increased risk of mental illness. Many caregivers are single parents: relationship breakdown for parents of children with special needs is reported to be around 80 per cent.

But there are moderators for the typical negative effects of caregiving: finances; social support; coping strategies; and a sense of mastery or self-esteem. 

In my own experience, participating in the labour force frequently offers a welcome contrast to the under-appreciated tasks of parenting and caregiving. Despite some challenges posed by opting to work, I value recognition, I enjoy collaboration, and I appreciate making a contribution.

Family is an integral part of my life, but not my sole identity, so my broader work life is a source of personal fulfilment. It also provides social engagement as opposed to potential isolation at home. Increased income is an added benefit.

Under Division 4 of the Fair Work Act, caregivers of children with disabilities have a right to request flexible working conditions in their employment. But the Act does not consider the needs of other kinds of caregivers, nor does it obligate employers to provide the flexibility requested. Some employers refuse out of misplaced concern that employees may work irregular or excess hours.

A lack of employer understanding prevents some carers from participating in the workforce, or traps those who are working into remaining in the same position interminably. This disturbs the positive effects of income, social interaction, skill development and self-esteem.

Since becoming a parent of someone with a disability and changing careers, I've been fortunate to have employers who have permitted part-time work. Stimulating, rewarding and flexible work with collegial coworkers and supportive management is a crucial aspect of my wellbeing. This has not always been the case, nor is it the case for all caregivers all the time.

The many challenges presented by caregiving mean many carers do not work despite their wishes. Other caregivers deliberately choose not to work because it is simpler to opt out. 

Yet whether imposed or chosen, being out of the workforce has a significant impact on the financial status of caregivers, particularly in the long term. There are income sacrifices, missed opportunities, lapsed skill sets, and longterm effects such as foregone superannuation. This cements the links between poverty and disability and mental illness.

The practical, physical, emotional and mental demands placed upon caregivers require similar levels of employment flexibility as those for people with disability or mental illness. In my view, caregivers would benefit by being recognised as an equity consideration in workforce inclusion and planning strategies.

Meanwhile, unpaid caregivers not participating in formal employment need ways to overcome caregiving strain. While improved labour force accessibility is important, the community must make sure caregivers' self-worth, skills, and social support is prioritised if we are serious about reducing mental illness.

Moira Byrne Garton headshotDr Moira Byrne is the parent of four children including a daughter with significant physical and intellectual disabilities. She holds a PhD in political science from the Australian National University and currently works as a policy analyst. 

This week is National Carers Week.

Topic tags: Moira Byrne Garton, disability, NDIS, carers



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Existing comments

As the mother of 6 children, of which the eldest has a severe intellectual disability, your words & thoughts resonated so powerfully. My husband & I both work & our stress levels are always heightened to the point that it impacts strongly on the other children, each of who needs our undivided attention. Although,Andrew brings us such unconditional love, at the end of each term, I am almost broken & feel I cannot carry on. Respite is very limited & few friends & family fully understand our heartbreak, exhaustion & our overwhelming desire to be "normal". However, through it all, I believe we are raising well rounded, caring children and as adults we are learning to love and enjoy the small pleasures life gives. Thank you for your words. Trish & Ian Bullock

Patricia Bullock | 14 October 2015  

Thanks Moira, there is much that resonates from my wife's and my experience with our autistic, OCD, intellectually impaired child.

Frank S | 14 October 2015  

Thanks for your comments Trish and Frank. I'm pleased it has resonated with you, and I hope you and your families receive the support you need to pursue your own well-being and fulfillment, as well as your loved ones.

Moira Byrne | 15 October 2015  

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