Abstract
In this article, I draw on my intersectional identities as a caregiver of a child with Foetal Alcohol Spectrum Disorder, as a registered social worker with extensive experience in the justice sector, and as an employed educator and researcher at a tertiary institute, to explore how I have used these multiple identities to create new initiatives that support families where Foetal Alcohol Spectrum Disorder is an issue, and introduce critical disability training for professionals working in the field.
Keywords
Introduction
Foetal Alcohol Spectrum Disorder (FASD) is a lifelong neuro-disability, caused by pre-natal alcohol exposure, leading to difficulties in physical, emotional, behavioural and cognitive well-being across the lifecourse. Families and caregivers can be impacted significantly, with additional stress and burdens as they seek to care for their disabled children (Domeij et al., 2018). Importantly, however, children and youth living with FASD have many strengths, and with the right supports and accommodations they can live a good life (Popova et al., 2023). Those supports, for the most vulnerable, will include social work services, alongside specialist FASD-informed services. Unfortunately, in many countries, including Aotearoa New Zealand, the policy and organisational infrastructure and funding to provide prevention, diagnosis and FASD-informed services is woefully lacking (Human Rights Commission, 2021). This dearth of services has fuelled a commitment to advocacy in my own social work practice, where I draw on my intersectional identities as a caregiver of a child with FASD, as a registered social worker with extensive experience in the justice sector and as an employed educator and researcher at a tertiary institute. This short reflective piece will explore how I have used these multiple identities to create new initiatives that support families where FASD is an issue and introduce critical disability training for professionals working in the field.
Using living experience
In 2007, my partner, daughter and I welcomed two beautiful boys to our family, from Russia. We were aware they had and would have challenges and 11 years later one was formally diagnosed with FASD after multiple and largely negative interactions with justice, welfare and mental health systems. The impact of this (initially) hidden disability was profound upon the whole family but particularly me, as a mother, as a social worker and as a researcher. I began to experience ignorance about FASD from professionals which turned into both intolerance and abuse towards my child alongside noticeable intolerance of other children and youth living with FASD in Aotearoa. I therefore made a conscious decision to advocate for understanding about the disability and educate social service professions about FASD, especially drawing on my living experience material when developing practice interventions for families (Good et al., 2017).
Popova et al. (2023) note the importance of developing treatment in partnership with families and individuals with living experience of FASD. The provision of parenting programmes for families for FASD in New Zealand was non-existent in 2016, and yet I was hearing from caregivers about a dire need for bespoke FASD parenting and education interventions. I gathered the best evidence from the literature alongside extensive conversations with family members who were, like my own, struggling with the lack of FASD-informed supports, and together we developed a range of face-to-face and online zoom-based FASD caregiver programmes. The objectives of the programmes are to help caregivers understand FASD as it impacts their children; assist them in developing strategies to support their children’s success and gain support for themselves through peer-to-peer relationships. Since 2017, these programmes have been successfully operating in both Australia and New Zealand, helping support 100s of families (Gibbs et al., 2023).
The incorporation of living experience perspectives (O’Leary and Tsui, 2022; Reid et al., 2022) into the development of group-based supports for families living with FASD has been essential for authenticity and trust-building. Evaluations from the Families Linking with Families programme in Australia have demonstrated overwhelmingly that the model of using caregivers of children and youth with FASD to develop, and co-facilitate, the programme has helped caregiver participants develop strategies to care for their children and enabled them to nurture positive peer-to-peer relationships with other families struggling with similar issues (Gibbs et al., 2023). Caregivers have also felt strongly that their own living experiences are valued, and they trust the genuineness of the facilitators, who are often both professionally qualified and parents of children and youth living with FASD.
Using practitioner and educator research identities
It is vital that social work students and professionals, alongside allied professionals, gain knowledge and skills to work with families, children and youth where FASD is an issue. We know from extensive research that very high numbers of children in contact with welfare and justice systems have or are suspected to have FASD, alongside other complex issues, and that often FASD is hidden or missed (McCormack et al., 2023; Popova et al., 2023). Data tell us that up to 36 percent of children in justice settings will have FASD; and in foster, adoptive or other care settings the range can be from 25 percent to over 50 percent (Popova et al., 2023). Despite these data on high prevalence rates, research tells us that social work and allied professionals are lacking in the necessary knowledge and skills required to practise in this neuro-disability field (McCormack et al., 2023).
To address these gaps in knowledge and skills I have developed extensive basic FASD 101 workshops and bespoke webinars and delivered these throughout New Zealand: to prison staff, to probation officers, to social workers, to disability organisations, to addictions specialist teams, to caregiver support groups, to teachers and to support workers in training. My position as an educator and researcher has enabled me to find the time to ensure I know about the latest research, and I have also engaged in two wide-ranging research projects with 56 caregivers and 43 stakeholders to inform the development of practice frameworks that can be used by practitioners to increase their knowledge and skills.
My practitioner identity has enabled me to develop practice implementation material, including a full-semester course in critical neuro-disability studies, that both students and professionals can complete (Lewis, 2022). This course, and the workshops and webinars I run all draw on the living experience of those living with FASD. Indeed, sometimes my now 20-year-old son contributes short podcasts and videos that complement any practice or research material I am delivering. This course facilitates understandings of both critical disability and neuro-typical humility (Chapman and Carel, 2022), which enable practitioners and students to approach FASD not just as an ‘individual’ disability but also as a complex societal issue, whereby systems and structures fail to accommodate neuro-divergence, leading to ableism, punitive practices and exclusion from resources. The application of neuro-typical humility from social workers encourages practice that focuses not on the deficits or impairments of families supporting a child with FASD, but on the interests, strengths and flourishing capacities of those family members.
Take-up advocacy
As with the caregiver and educational programmes, I realised that no one else was going to do this work if I did not undertake it. This has seen me undertake what Benish and Weiss-Gal (2024) call ‘take-up advocacy’ alongside more generic cause advocacy where I have written concerned submissions to politicians and media-based pieces appealing for FASD to be recognised as a disability, for funding to be provided to support families, and for the discrimination against those living with FASD to stop. Put simply, take-up advocacy helps individual service users get the services and supports they need, and in relation to disability, have their disability rights honoured and implemented. As a social worker in a country where few FASD-informed options have been available I’ve had to be persistent and creative. This has involved assisting individual families with knowledge of how to get resources that will help their child; writing letters for caregivers to enable them to present to clinicians and gatekeepers to access services; or providing information about the most FASD-informed doctors and psychologists who might be able to offer diagnostic services. It has also involved informing families and individuals living with FASD of their potential disability allowance entitlements, alongside giving them tips as to how to best fill in the online forms that will enable them to meet strict criteria. It involves encouragement to caregivers and individuals living with FASD, to ask for funded help from charities which they hadn’t realised might assist them in some small way. Finally, it involves accompanying caregivers and other family members to crucial meetings and hearings where it matters that someone knows all about FASD. All of this I have had to do myself as a mother and self-advocate, so why not use it to benefit service users who have had to endure the same systemic gatekeeping and exclusion? As Benish and Weiss-Gal (2024) note, this work must be ‘with’ and not ‘for’. There is always a danger that working in the disability area of practice that a practitioner can slip into ‘taking-over’ because it’s perceived as quicker and less time-consuming. But ‘with’ it must be, alongside the implementation of neuro-typical humility mentioned earlier, as this enables the families where FASD is a big part of their lives to gain the necessary knowledge and confidence to get what they need now, and then still have the resilience and skills to battle for their child to be accommodated and understood by education and health systems, where they often need additional assistance or specialist treatments over decades.
Implications for practice and conclusion
Creating collaborative partnerships between social workers and those they are tasked to help is core social work (O’Leary and Tsui, 2022). The work I have described above has enabled me as a social worker to partner with caregivers especially, but also with professionals to increase their knowledge of FASD and their ability to provide FASD-informed services. Also, because I have trained so many professionals, I meet them out in the community regularly and we check in with each other as to how they are using the training to help their own clients with FASD. Take-up advocacy and neuro-typical humility ensure the building of relationships that are founded on ensuring people have their disability acknowledged and valued, indeed welcomed as a diverse identity (Benish and Weiss-Gal, 2024; Chapman and Carel, 2022). Practitioners and student caring professionals would do well to seek out both generic disability training and specialist FASD training as most social work courses do not offer training in these areas.
For practitioners to truly know what it is like to live with a neuro-disability they will need to seek out the wisdom from those who live it, from those who are misunderstood, maligned and mismanaged. Often clients with complex neuro-disabilities, like FASD, can also be some of the most challenging to work with. Yet, at the same time, social workers can be teachable and proactive in listening to families and those walking alongside the person with FASD. Being neuro-typically humble ensures social workers understand that people who live with FASD have as much right to well-being as those who do not live with FASD.
My own journey, whereby I was ‘forced’ to set up services and training because there was none, where I created caregiver support groups because I could attend none myself, where everywhere I turned, I found gaps that I might have to try and fill, has meant that I have viewed caregivers and parents as experts who are able to educate professionals in best practice. Drawing on the strengths and knowledge of FASD from service users and their families will help practitioners not only understand the day-to-day circumstances their clients face but also to seek answers and solutions with those same clients, joining them in the battle to gain resources in a field barely recognised by social work as hugely significant among their client populations.
Footnotes
Funding
The author received no financial support for the research, authorship, and/or publication of this article.
