Care leavers are people who have ever spent time in care as children (i.e. under the age of 18). This care may have been foster care, residential care (mainly children’s homes) or other arrangements outside immediate or extended family, including orphanages and other institutions. Care may have been provided directly by the state or by private arrangements. According to the Australian Government, more than 500,000 Australians have been institutionalised or in out-of-home ‘care’ during childhood (until 1989). Government policies over time have seen children removed from their families and institutionalised for different reasons since colonisation, including poverty, child removal policies (race), parental mental or physical illness or death, child illness and disability, family breakdown, separation, divorce, abuse, or neglect and limited community or government support for families or single mothers.
The Commonwealth Government recognises care leavers as a group of people with special needs due to childhood trauma and continued disadvantage, resulting from the practice of removal from family and community on their lives. In some cases, state and Federal governments have made formal apologies to care leavers, acknowledging the impact of government policies on children, their families and communities. Care leavers may also be called the Forgotten Australians, Former Child Migrants or Stolen Generations. Some care leavers may only identify themselves with terms such as ‘former ward of the state’, ‘state wards’, ‘wardies’ and ‘ex-residents’.
Aged care considerations for care leavers
All individuals have the right to feel heard, safe and cared for. Early life experiences, especially traumatic ones, have a large and ongoing impact on people’s lives. There are special considerations for people whose earlier life experiences have caused harm, trauma and lifetime disadvantage. These considerations must be reflected upon when care leavers enter aged care, as childhood trauma can continue to impact older people in care. Aged care can be an area of particular anxiety for care leavers, given their earlier experiences with institutional care. A person-centred, empathetic and trauma-informed approach needs to be used when working with care leavers, who have often experienced mistreatment, loss, trauma, fear and anxiety. Aged care workers and health professionals must recognise and respond to the needs of care leavers. In doing so, they can make sure that care leavers have a less traumatic and more positive and engaging experience in aged care.
Ageing can be a difficult process for care leavers, particularly when moving into residential aged care settings. The impact of childhood memories and trauma is often life-long—building trust in care providers and in formal care settings may be problematic. Empowering aged care staff to be aware of, recognise, relate to and help people who are experiencing long-term trauma due to negative childhood experiences is best practice. Care leavers often struggle with mental health issues and the ability to access the same opportunities other Australians do. They often have poorer health and more complex needs as they age. Many do not share their experiences with others—sometimes not even their own children or partners may be aware of their life experiences.
Janet’s story features below. Her experiences are common to many care leavers, highlighting key considerations for care leavers in aged care settings:
Janet was removed from her family when she was four years old. Janet’s childhood experience as a state ward was very traumatic. She has felt a lifelong sense of separation, loss and abandonment, and has struggled as an adult with trauma-related mental health issues. She has not had the support required to manage her self-esteem and anger-related problems resulting from her abusive childhood. Leaving state care as a teenager without family to support her has meant that Janet has had little opportunity to improve her skills and education. She has struggled with shame due to her limited ability to read and write, which has restricted her job opportunities. Janet’s difficult and abusive childhood experience in an institution has meant that the structured and scheduled reality of aged care, with limits to privacy and personal control, will negatively impact her well-being.
Janet developed certain coping and survival strategies in childhood—instead of developing more adaptive emotional, behavioural and social skills. These strategies are how Janet copes with most issues and situations as an adult. Maintaining stable relationships has been difficult for Janet and she has lived alone most of her life. Some of her daily fears, related to painful childhood experiences (such as her lasting fear of physical contact), may seem irrational to others. Despite her age, she still grieves for her lost family. Like many of her peers, Janet has experienced poor mental health, including depression, anxiety and undiagnosed post-traumatic stress disorder. She has known people with similar childhood experiences who have substance abuse issues and have attempted self-harm and suicide. Janet is now 70 and due to continuing poor health, is facing a move into residential aged care, a prospect she finds frightening.
Practical considerations in caring for care leavers
There are many potential emotional feelings and triggers for people like Janet who have experienced childhood trauma and disadvantage. Some of these might include:
- anger and shame at difficult to find or non-existent identification paperwork
- feeling alone, isolated, unwanted and lacking a sense of belonging
- fearing not being believed about events or experiences
- worrying about staff turnaround due to having to repeat their stories multiple times to different care providers
- not feeling in control of daily life
- inflexible daily schedules, including strict sleep schedules
- fearing being confined to one room, feeling ‘locked in’ and the sound of jangling keys
- factors reminiscent of dormitory living, including single beds and cupboards
- fearing personal items being removed (and communal items being favoured)
- fearing authority figures (including medical professionals) and clinical settings such as hospitals
- denial of cultural traditions and practices
- unappealing food or fear of force feeding
- fearing personal care due to trauma history
- religious iconography, symbols and shrines
- the names of prospective aged care facilities having association with prior institutions
Understanding some of the common triggers for care leavers like Janet can help in providing appropriate and sensitive care. Below are some practical tips for health professionals and care workers and organisations:
- be as flexible as possible in providing care
- be observant. People may not initially tell their care providers about their childhood experiences until they feel comfortable with you (if at all)—some haven’t disclosed these experiences even with spouses or children. If you notice heightened reactions to situations, you may wish to discuss their care approach with your supervisor.
- listen to and believe the stories care leavers may share with you. This is important for their identity and attempts at healing.
- many care leavers carry stigma about having been in the ‘care’ system. People enjoy gentle, supportive and person-centre care.
- consider past care experiences and possible trauma when planning or providing care
- recognise that many care leavers are reluctant to seek health services, especially in hospitals, due to prior experiences of trauma
- support Aboriginal and Torres Strait Islander care leavers and members of the Stolen Generation to return to country, if requested
- create supportive, not prescriptive routines. Avoid telling clients how and when to do things in their daily lives.
- use locks only where necessary to ensure privacy and security, and limit the sound of jangling keys
- where possible, try to encourage individuals to be independent in time scheduling and daily tasks, including bathing and dressing
- ensure privacy when showering or changing
- if a person requires bathing by a care worker, allow choice with respect to the gender of a care provider
- include people in activities or events of interest to them and include changes in routine that individuals will enjoy, such as a shopping trips or visits to local parks
- when assisting with meal consumption, spend time establishing a relationship and creating a relaxed atmosphere
- ensure food and menu items are varied, nutritious and appealing. Be aware some people may not like eating particular foods, or being in communal environments.
- acknowledge that refusing food is a personal choice. A difficult ethical issue for families and care workers is managing older adults who either refuse food or can no longer eat.
- respect people’s privacy, be wary of invading personal space
- get to know the stories and attachments behind personal belongings
- avoid touching personal belongings a person might have in their room or home, unless you are asked to do so
- ensure clothing is appropriately labelled, as some individuals may fear losing their items when their clothes are washed communally
- be sensitive to the fact that for some people, celebrating events may be more stressful and isolating than not marking the occasion. Celebrating birthdays and family-oriented celebrations such as Christmas, Father’s Day or Mother’s Day may increase isolation or depression. Ask people about their preferences for acknowledging (or not) specific milestones or holidays.
- help people with everyday tasks like reading the newspaper, menu and lifestyle programs / schedules
- add audio books to your library to address literacy issues
- ask people about their experiences, hobbies and likes and dislikes to help you and your team to personalise their care and respond to their particular needs
- refer to all people by their preferred name. If you are unsure, ask.
- recognise that exercising choice and control can be challenging for people who are not accustomed to such opportunities for decision making
- be flexible about documents typically used to prove identity (e.g. identification papers and proof of identity, such as birth certificates) if you think someone may be a care leaver. Often, their personal records are sparse. Always discuss options with them and propose solutions, rather than assuming a one-size-fits-all approach.
- help people to complete forms by clearly explaining the information required and what it will be used for. If possible, ask a family member, carer or friend to help in overcoming any communication difficulties.
- make information available in other forms (as opposed to only in printed forms) and respond sensitively to signs of discomfort from people if asked to read something or complete forms quickly. Never hurry people to complete forms or supply other written documents.
- when people enter aged care, discuss whether they want to share a room or have a private room (if accommodation options allow a choice)
- discuss the preferred layout of rooms with each person, to make sure you meet preferences for how their bed is placed, etc.
- give people with the freedom to use outdoor areas where they can walk around safely
- discuss key strategies to lessen social isolation, including inviting visitors through appropriate volunteer schemes
- provide ongoing training and support for all aged care workers potentially dealing with care leavers
- provide specific trauma-informed training for all staff
- discuss cultural, religious and spiritual needs sensitively and respectfully integrate these aspects into care
- including social histories / life stories as a practice so that staff are better informed about people’s histories and experiences and can provide truly person-centred care
The Australian Government has released a new package of resources to help care leavers traumatised by their experiences in orphanages, children’s homes, foster care and other institutions in their transition to aged care services. These resources also can help aged care providers to better understand the issues faced by these people and to develop organisational service capabilities.
My Aged Care have information for aged care providers about providing care to care leavers and about the National Aboriginal and Torres Strait Islander flexible aged care program. Altura Learning hosts an online course on care leavers in aged care. Helping Hand have created a guide for aged care, titled ‘Forgotten Australians: Real Care the Second Time Around’. (3.9MB pdf) The Alliance for Forgotten Australians (AFA) has produced a booklet (3.5MB pdf) for healthcare providers and organisations to support care leavers in Australia and provide information for service delivery organisations. The National Library of Australia has also produced a booklet titled ‘You Can’t Forget Things Like That’ (541kb pdf) about the care leavers’ oral history collection held at the National Library of Australia.
There are supports for Forgotten Australians and former child migrants, including the Australian Government Find & Connect Services (1800 16 11 09). There are also supports for the Stolen Generations, including The Healing Foundation and the Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) Link Up Services.
Palliative care and advance care planning considerations for care leavers
There is limited published research or recommendations in Australia about palliative care practice and advance care planning considerations for care leavers. The following considerations for palliative care and advance care planning among care leavers revolve around adopting empathetic, person-centred care approaches:
- refer to each person by their preferred name
- be flexible about establishing identities via written identification documents
- be patient with people’s different literacy levels. Support people to complete written forms.
- build rapport with each person
- create a relaxing and safe atmosphere
- ask each person about their personal preferences for safe and supportive care
- adopt a sensitive and empathetic approach
- provide care, advice and support according to each person’s preferences, values, beliefs and interests
- get to know each person’s individual story and social history
- be considerate of people’s cultural, religious and spiritual requirements
- respect people’s privacy and personal space
- be sensitive to differing family dynamics. Ask each person if and how they would like their families and friends involved in their care.
Seek out relevant information and training when working with care leavers in palliative care settings or when supporting advance care planning. There are sensitivities and nuances to be aware of, but building relationships and providing a caring and safe environment is vital to ensuring care leavers’ experiences of care and support in later life contribute to their well-being. For more information visit palliAged, the Alliance for Forgotten Australians (AFA) or Care Leavers Australasia Network (CLAN).