The barriers just keep coming: Poor diagnosis and support for victim-survivors of family violence with brain injuries

Victim-survivors of family violence often sustain undiagnosed brain injuries which have a profound impact on psycho-social health and overall cognitive function. In today’s analysis, Phoebe Nagorcka-Smith of Good Shepherd Australia New Zealand (@GoodAdvocacy) details how acquired brain injuries (ABIs) too often go undiagnosed, and even when they are diagnosed accessing required support remains out of reach for many women.

There is a strong link between intimate partner violence and brain injury

A recent decade-long analysis of people presenting to Victorian hospitals due to family violence showed that 2 in 5 women and 1 in 4 children presenting with injuries had sustained a brain injury. In terms of brain injury prevalence, the women and children who make up these statistics are the tip of the iceberg – while 1,800 Victorians attend hospital each year due to family violence, in a Personal Safety Survey around 220,000 Victorians reported experiencing family violence in the previous 12 months. Studies show that between one quarter and three quarters of women who are victim-survivors of family violence have an acquired brain injury (ABI) as a result of the abuse. Aboriginal women are 35 times more likely to be hospitalised as the result of family violence, and up to 21 times more likely to experience a head injury from assault than non-Aboriginal and Torres Strait Islander populations.

The impact of brain injury

Symptoms of brain injury include headaches, fatigue, irritability, memory loss, frustration, depression, dizziness, poor concentration, noise sensitivity, difficulty communicating, restlessness, and taking longer to think (see here, here, here, here and here. Brain injury can also increase the risk of long-term neurological decline, such as dementia or Chronic Traumatic Encephalopathy (CTE). The similarity in symptoms between dementia and CTE, and underdiagnosis of CTE in women, brings the high rates of dementia in women into question. It also raises the possibility that CTE may contribute to the rate of dementia diagnosis in Aboriginal women being 3-5 times higher than in non-Aboriginal women.

Acquired brain injury is common for victim-survivors of family violence, but often remains undiagnosed and creates barriers to accessing help. Photo by Nicolás Flor on Unsplash

Reflective of broader gender gaps in brain injury research, the devastating impacts of CTE have mostly been explored in boxers, ex-military personnel, and rugby and AFL players – in other words, men -  despite its suspected prevalence in women who are victim-survivors of family violence. A review was commissioned by DHHS following the Victorian Royal Commission into Family Violence to understand brain injury prevalence amongst victim-survivors, but there is still a huge gap in terms of treatment and recovery. The gender gap in research translates into a poor understanding amongst healthcare professionals about the way that brain injury manifests in women, and a resulting under-diagnosis.

Most go undiagnosed

Even though 80% of women victims of IPV attending hospitals have head or facial injuries, brain injuries are often missed. While there is a strong crossover between ABIs and trauma, due to the dismissal and marginalisation of women that is ingrained in our medical system, (see also here, here and here) [i] it’s also true that symptoms of brain injuries in women can be perceived by practitioners as emotional or psychological issues, rather than neurological. Brain Injury Australia reports that other barriers to diagnosis include practitioners having trouble distinguishing between symptoms of brain injury and drug abuse, victim-survivors’ concern that diagnosis will impact their ability to maintain child custody, stigma, a lack of knowledge about referral and diagnosis options, and the cost and availability of a neuropsychological assessment.

‘We face six months waiting lists at the minimum – probably 12 months – to get a neuropsychological assessment done and then you have to pay in excess of $1,500. We just do not have that funding.’ – practitioner (Brain Injury Australia Report)

Barriers to recovery and support

Administrative burden is the work that people have to do to access social support. It can include learning costs (how hard it is to understand how to access and use a program), psychological costs (how emotionally draining it is), and compliance costs (how difficult it is to meet all of the program rules and requirements). The administrative burden on women who have a brain injury, especially those escaping violence, is large.

The administrative burden can be especially high when victim-survivors are required to access multiple services for support. For example, financial counselling, family violence counselling, housing, and social security payments may all sit within different organisations due to siloed funding at a government level. Repeating their experiences can compound a victim-survivor’s trauma, while navigating many appointment locations and times can be difficult to track amongst the avalanche of changes brought about when a woman leaves an abusive relationship. All of these challenges are exacerbated when experiencing the psycho-social or cognitive effects of ABI. The Orange Door has aimed to improve victim-survivors’ experiences by providing case management, data sharing, and a single, holistic service. However, due to a high demand for services, even the Orange Door can only support women for a limited time. Victim-survivors with brain injuries are likely to need to access other social supports, such as Centrelink payments or, if they have been able to secure a diagnosis, the National Disability Insurance Scheme (NDIS).

A review into the administrative burdens of the NDIS showed that participants are forced to navigate complex systems including confusing paperwork, inconsistent information, and planning meetings that required hours of pre-work such as conversation, assessment, and appointments with specialists. NDIS participants needed to have a high level of understanding of their disability and possible supports (even when their disability was recently acquired and they didn’t know what might be helpful), to be able to communicate these things clearly, to be comfortable advocating for themselves, able to access specialist advice, and willing to endure frustration and challenges. In other words, the system requires applicants to have good executive functioning, language skills, memory, self-confidence, emotional control, and access to financial resources: the very things that a brain injury, particularly in the context of trauma from family violence, erodes. Such differences in experience of disability, and of life itself (e.g., also providing care for others) appears to be excluding many women from NDIS payments.

Brain Injury Australia reports that people with a brain injury can have trouble remembering appointments, navigating travel arrangements, paying for transport, making decisions, exercising emotional control, and being able to concentrate on personal needs and priorities. A support person to help take in and keep track of information may be helpful, but the context of family violence can make accessing a support person difficult, particularly when a perpetrator of abuse was also a carer. While barriers to support systems such as the NDIS are experienced by all, Aboriginal and Torres Strait Islander and culturally and linguistically diverse communities appear to have far worse experiences. Structural issues including racism, inaccessibility, and a lack of cultural awareness or community partnership, make it even harder for some women to access support.

The administrative burdens of the NDIS are heavily documented, but they also exist for people accessing Centrelink. Online forms, specialist medical reports, meetings in hard-to-reach locations or at inconvenient times, complex eligibility and compliance criteria, and staff without an understanding of brain injury, are all features of our social welfare system. Centrelink programs can inadvertently punish people for symptoms of their brain injuries, such as through cutting payments due to missed appointments, a poor understanding of program requirements, not having paperwork completed on time, or failing to clearly communicate all the information that’s needed.

Deconstructing barriers can be done

In order to be a true safety net, our social support systems must be accessible to the people who need it. This can include ramps and handrails, but also language translation, having staff available by telephone without long wait times, assistance to complete forms, information in plain English, and programs and systems that are easy to understand and navigate. In the medical system it requires greater understanding of brain injuries, increased rates of diagnosis, tackling sexist attitudes, and investment in research around recovery for women, which involves treating trauma as well as the physical and cognitive injuries. Otherwise, women with brain injuries from family violence are punished many times over: first with abuse and injury, then with the long-term symptoms, dismissal by the medical system, a loss of employment and quality of life, and finally systems that should help, but that are designed in ways that cause distress and further compound disadvantage.    

This post is part of the Women's Policy Action Tank initiative to analyse government policy using a gendered lens. View our other policy analysis pieces here.

Posted by @SusanMaury

[i] Also of note is Aronowitz RA, ‘From myalgic encephalitis to yuppie flu: A history of chronic fatigue syndromes’, pp.155–181, in: Rosenberg CE, Golden J (eds) (1992) Framing Disease: Studies in Cultural History, Rutgers University Press, New Brunswick, NJ.