Summary and Conclusion
Most people with FASD feel like a ‘square peg in a round hole’, no service or facility fits their requirements, and they are grossly misunderstood. People with FASD, due to their inherent invisible brain dysfunction and disability, place demands on each of their environments—family, school and the wider community. If their needs are not understood and met, their behaviours can become out of control, bizarre, desperate, unpredictable, impulsive and dysfunctional. Many find themselves in corrective institutions and/or with poor mental health (Streissguth et al. 1997).
The compelling evidence outlined in this chapter suggests that the UK’s Social Care model is not robust enough to prevent an avalanche of innocent children being born every year with FASD or to provide adequately educated professionals and appropriate support services for fetally affected individuals and their families. The families of all studied children reported Social Care’s resistance to recognizing FASD as a disability according to the Government’s definition and the Children in Need criteria, and to providing appropriate services and support as laid down by Every Child Matters. This is contrary to both national guidance and accepted good practice. Many families have had to go to significant lengths and through great crisis to care for their complex disabled child with minimal support.
It is vital that Social Care practitioners, management and strategic decision makers address the systemic denial of FASD and take action on alcohol misuse seriously, especially in pregnancy where there is a chance to alleviate the risks of having a child, or further children, with FASD and the impact of possible secondary disabilities for the person, their agency and Society. Social Care needs to take a positive lead on FASD—obtaining fully evidenced facts and recording accurate data; sending out strong messages regarding alcohol misuse; maximizing training on FASD; and developing effective and supportive policies (Munro 2010). They need to improve outcomes for families by: raising awareness of how to prevent and detect FASD; obtaining accurate multidisciplinary assessments; accessing funding for effective personalized support packages; and understanding the enormous lifelong impact this disability has on the person, their family, carers and society.
Alcohol consumption is a major problem for Social Care. Many cases tend to be ‘top end’ involving Care Proceedings or Child Protection. The costs are high, complex and involve a large amount of interagency liaison (often by professionals with insufficient FASD training and awareness) with very vulnerable and often disabled children (Forrester and Harwin 2004). In the Yukon Territory, Canada, the Government found that children with FASD from the care system are approximately four times more costly to care for, both financially and in care time, and are significantly more likely to require additional education, health and support than other adoptive children who do not have FASD (Alton and Evenson 2006).
However, if the Government does nothing to support families of children with FASD, the costs are likely to spiral in adulthood. In an American study, Streissguth et al. (1997) found that children with FASD were likely to be vulnerable to life events and to develop secondary disabilities in adulthood: out of a cohort of 415 individuals with FASD, 90 % had needed long-term support in the transition to adulthood; 60 % were or had been confined in mental health and criminal justice situations; and 50 % exhibited some form of sexually inappropriate behaviour. Children with FASD are therefore a group whom it is worth understanding and making an investment in at an early stage to reduce costs to Society.
This is a large agenda, especially in a time of great cutbacks, but alcohol misuse in the UK is out of control. It is one of the most important challenges and areas of future expenditure facing Social Care’s policy makers, budget holders and practitioners this century. Tackling the UK’s drinking culture will need an engaged, sustained and appropriately complex response to change attitudes, knowledge and behaviour (Stead et al. 2009). Young women who binge drink play ‘Russian Roulette’ with their pregnancies, while children with preventable and lifelong disabilities are born in enormous numbers every year. Multi-targeted actions at policy and service level are needed to support people in making changes.
In the UK there is still no legal requirement to notify and centrally record if a child is diagnosed with FASD (Adamson and Templeton 2012). This lack of central recording is failing our children by preventing them getting the support they rightly require and feeding systemic denial in services. Until this and our alcohol culture are addressed, children will continue to be born with a devastating and preventable disability. Ensuring a good childhood is hard enough (Layard and Dunn 2009), but for the increasing numbers of children born fetally affected in ‘Binge Britain’, Social Care need to take action to optimize the long-term wellbeing of an ever increasing number of innocent people and to provide services for a hidden section of society crying out for practical help with one of the most frustrating and complex conditions to manage.