A learning disability has been described as a significant, lifelong condition that starts before adulthood and affects a person's development, meaning they need help to understand information, learn skills and cope independently (Scottish Government, 2013). An increasing number of women with learning disabilities are becoming parents (Parish et al, 2015) and have a legal right to do so free from discrimination, in accordance with the Equality Act [2010]. Despite this, health and social care systems in the UK have been arguably poor at supporting successful parenting for people with learning disabilities, as demonstrated by the very high proportion of children removed from parental care because of safeguarding concerns when parental learning disability is present (Booth et al, 2006). The legislative and policy landscape in Scotland should be driving early engagement and supported parenting, with a view to reducing the number of children removed from their parents' care, and this has implications for the role of the midwife and delivery of maternity services.
An unknown quantity
Assessment and formal diagnosis of learning disability varies from country to country and over time, meaning that estimates of prevalence within the population also vary. In England, the Learning Disabilities Observatory estimate from epidemiological research studies that 2.16% of the adult population has some form of learning disability. Of this 2.16%, however, only 23% are known to GPs and identified on their registers. This leaves a ‘hidden majority’ of 77% of people with learning disabilities unknown to health and social care services (Public Health England, 2016). In Scotland, there were 6.1 adults with learning disabilities known to local authorities per 1000 of the population in 2015 (Scottish Consortium for Learning Disability, 2016), but it is thought that almost three times as many actually have learning disabilities (as identified at school age) but no longer use statutory learning disabilities services. This could be for a range of possible reasons, including stricter assessment requirements for adult services and not identifying themselves as having a learning disability (Scottish Government, 2013). This hidden majority is significant when it comes to maternity services, as it means that only very few of the women potentially affected by a learning disability will already be identified as such, making recognition of signs of a learning disability by the midwife an important first step in good maternity care.
Learning disabilities and health
Learning disability rarely comes alone and there are often multiple and complex associated health needs. In Scotland, for example, only 15.2% of people with learning disabilities have very good health, compared to 52.5% of the population as a whole (Scottish Learning Disabilities Observatory, 2017). People with learning disabilities were also found to have multiple conditions, such as sight and hearing problems, as well as mental health problems (Scottish Learning Disabilities Observatory, 2017). According to the 2013 confidential inquiry into premature deaths of people with learning disabilities (Heslop et al, 2013), the life expectancy of a person with a learning disability is 13 and 20 years less than the general population for men and women, respectively. This is widely agreed to be the result of a combination of interrelating factors, commonly presented as the five determinants of health inequality for people with learning disabilities (Marmot, 2010; Homeyard et al, 2016; Moulster et al, 2016; Public Health England, 2016). These are:
‘It is often difficult for people with learning disabilities because of negative perceptions of their pregnancy, including from professionals, who view them as patients with deficits, lacking the knowledge and skills to provide the appropriate care’
The latter three in this list are particularly important with regards to healthcare, as they are issues that the service should be able to address directly. The last item is worrying given that the inquiry concludes that 42% of the deaths it looked at were ‘premature’, meaning there was an identifiable event in the ‘pathway’ to death without which the person would have likely lived for a minimum of another year (Heslop et al, 2013). The learning disability charity Mencap has repeatedly ascribed premature deaths of people with learning disabilities to institutional discrimination. It paints a damning picture of a health service that is not set up to accommodate people with learning disabilities, does not understand the needs of people with learning disabilities and which does not view people with learning disabilities as a priority (Mencap, 2004; 2007; 2012).
Looking specifically at maternity services, Parish et al (2015) found that maternal and neonatal outcomes were poorer for women with learning disabilities than for the general population, finding a higher likelihood of caesarean section, preterm labour, pre-eclampsia and low birth weight babies. The study did not attempt to answer the question of why these differences existed, but suggested that it was a combination of the five determinants of health inequality for people with a learning disability. The authors recommended that further research was required to understand how significant a factor service provision and experience of service provision is in poorer outcomes. Homeyard et al (2016) found evidence that women with learning disabilities were over represented in the number of women who died of thromboembolic disease, possibly due to unmet health needs. The authors also found that women with learning disabilities were also the least likely to seek out and attend regular antenatal care, as they often came from the poorest circumstances. A range of studies looking at the emotional experience of pregnancy, childbirth and early parenthood have found that it is often difficult for people with learning disabilities because of negative perceptions of their pregnancy, including from professionals, who view them as patients with deficits, lacking the knowledge and skills to provide the appropriate care (Redshaw et al, 2013; Walsh-Gallagher et al, 2012; 2013). This is supported by Höglund et al (2013) who found that almost half of midwives caring for women with learning disabilities had no education in this area, and more than one-third of midwives thought that people with learning disabilities should not be pregnant and give birth at all. More encouragingly, Castell and Stenfert Kroese (2016) looked at midwifery in the UK and found midwives with more positive views trying extremely hard to meet the needs of the women in their care, but hampered by a lack of training and a lack of support themselves.
Learning disabilities and parenting
Determining the number of parents with learning disabilities is difficult, but some estimates suggest that 1 in every 15 people with a learning disability is a parent (Cleaver et al, 2011) and there is consensus that increasing numbers of people with learning disabilities go on to have children (Booth et al, 2006; Homeyard et al, 2016; Parish et al, 2015). This may be the result of changes in societal attitude and consequent legislative and policy drivers, which have increasingly recognised the rights of people with learning disabilities and focused on inclusion and supported ‘normal’ life, rather than segregation and institutionalisation. The success of these changes in attitude and approach can be seen in Scotland, where more than 50% of people with known learning disabilities now live in mainstream accommodation, triggered largely by the closure of long-stay hospitals for people with learning disabilities in the early 2000s (Scottish Consortium for Learning Disability, 2016). Despite this progress however, in the UK it has been found that 40-60% of parents with learning disabilities have their children removed from their care for child protection reasons (Booth and Booth, 2004). Globally, it has been shown that parents with learning disabilities are disproportionately represented in care proceedings, more likely to be involved in child protection investigations and more likely to lose their children than any other group of parents (Booth and Booth, 2005). To understand this, it is useful to look more closely at what child protection concerns relate to for parents with learning disabilities.
Child protection
The most common reasons for child protection proceedings against parents with learning disabilities— and the eventual removal of children—are neglect from omission and emotional abuse (rather than wilful neglect or abuse). This is commonly because of a parents' potential difficulties with, for example, learning new skills, keeping a track of time, establishing and maintaining routine, understanding written information, and recognising and responding appropriately to the emotional needs of another human being (Booth et al, 2006; Kollinsky et al, 2013). These difficulties could undermine the ability of a parent with learning disabilities to meet a child's basic needs, such as being kept clean and dry, being sufficiently and safely fed, and being given opportunities for brain development through physical contact and attachment to parents. Being unable to meet these needs could lead to the potential for significant harm that would present as missing development goals (Cleaver et al, 2011).
However, neglect and emotional abuse is not an inevitable consequence of parental learning disability. Some argue that inaccessible services and information (institutional discrimination), and consequent reduced antenatal care, leads to a lack of timely and appropriate support for the parent, denying them the opportunity to learn to become a ‘good enough’ parent in a safe and well supported environment (Booth et al, 2006; Scottish Consortium for Learning Disability, 2015). Booth et al (2006) go so far as to suggest that the child protection system itself discriminates against parents with learning disabilities by imposing the same rules, procedures and timescales on them as to people without learning disabilities, despite this causing them significant disadvantage. For example, it was found (Booth et al, 2006) that a lack of co-operation or engagement with services was often cited by social workers as evidence for assessing parents as unable or unwilling to change, and therefore grounds for court proceedings. However, this failed to recognise that missed appointments or lack of obvious immediate change do not in the case of learning disabilities necessarily mean a resistance to engagement and change. Instead, these findings may simply reflect the nature of the learning disability and the practitioner's failure to make adequate adjustments for difficulties such as an inability to tell the time, read appointment letters, or understand explanations in the same timescale as people without learning disabilities.
As well as needing support in parenting, it is important to acknowledge the range of other issues that women are likely to be dealing with, such as social isolation, poverty, mental health problems, experiences in care, a history of abuse, or having a child with a disability. All of these are more likely for parents with learning disabilities than for the general population, and the cumulative effect is argued by some to be more significant to a child's development than the parental learning disability itself (Cleaver et al, 2011). These issues therefore need as much attention in any support planning as the parental learning disability does—if not more.
Legislative and policy landscape and the role of the midwife
Supported parenting, holistic assessment of need, and a proactive preventative approach to child protection and wellbeing is now the aspiration in Scotland, represented in its legislative and policy approach. The Children and Young People (Scotland) Act [2014] obliges local authorities to provide services and support to children at risk of being removed into care, their parents and pregnant women whose child is at risk of being removed into care. The national approach to improving the lives of people with learning disabilities, The keys to life (Scottish Government, 2013), and relevant policy documents such as the National Parenting Strategy (Scottish Government, 2012) and Supported Parenting (Scottish Consortium for Learning Disability, 2015) outline the appropriate support for pregnant women or parents with learning disabilities and what services should be involved in providing it. The Equality Act [2010] obliges service providers to make reasonable adjustments to their practice in order to ensure users suffer no discrimination as a result of their learning disability. When implemented fully, this should all mean fewer children being removed from their parents' care across the population as a whole and particularly from families with parental learning disabilities. But what does this really mean for the midwife?
Implications for midwifery
Given the limited understanding about prevalence of learning disabilities, particularly in the adult population in Scotland (Scottish Government, 2013), midwives need to be aware that any woman they meet may have learning disabilities that have not been formally identified. Once a midwife suspects or knows that they are working with a woman with a learning disability, they have a legal, professional and moral obligation to make reasonable adjustments to practice, in accordance with the Equality Act [2010]. This might mean longer appointment times or a change in communication style using, for example, the easy-read resources that are available throughout Scotland (although it is not known how widely they are actually used). It might also include adjustments in the hospital setting that minimise anxiety for the mother and reduce risk to the child, such as not leaving the mother alone with her child for prolonged periods of time. With regards to child protection, engagement with services and assessed parenting capacity are two key elements in decision-making (Booth et al, 2006; Kollinsky et al, 2013). Reasonable adjustments to practice might therefore include reminding women of their appointments beforehand via text, and timely referral to and collaboration with community learning disability teams and the health visitor to ensure that women have the tools they need to get to appointments, such as confidence with public transport. Care will almost certainly involve adjustments to antenatal and parentcraft education, which may need to be delivered in shorter, individual sessions in a woman's home. A midwife can also ensure that women going into child protection proceedings have the formal advocacy to which they are entitled, which has been demonstrated to be effective in improving the outcomes for parents with learning disabilities (MacIntyre and Stewart, 2012). Midwives can also direct women and families to third-sector organisations such as People First (Scotland). How a midwife views a woman and how they make her feel may be as important to ongoing engagement as adjustments in practice, and so individual midwives should be self-aware and vigilant to their own prejudices, qualities that can be encouraged by an open and reflective workplace.
In short, good maternity care for women with learning disabilities inevitably means a greater time investment, and midwives themselves have identified a need for greater training and support to recognise and understand need, and to adjust and plan care accordingly (Castell and Stenfert Kroese, 2016). This has implications for pre- and post-registration training and service provision. It might be appropriate, for example, to create a specialist learning disabilities midwifery role to advise, support and provide the more intensive engagement, which already exists in some locations for substance misuse. It is also possible that the advent of The Best Start initiative (Scottish Government, 2017) is a promising change for all women, and especially those with greater need (Scottish Government, 2017). Improved relational continuity has well known positive impacts on outcomes (McLachlan et al, 2012; Sandall et al, 2013; Reed, 2016; Homer et al, 2017) and the model would give midwives more freedom to arrange longer appointments, potentially in women's homes, and greater opportunity to get a better impression of the overall family situation that the child would be coming into. However, a change in care model alone will not automatically improve maternity care for women with learning disabilities. A new care model will not negate the need for training and support for midwives to better meet the needs of women with learning disabilities, and the size of caseload will need to be responsive to the needs of the women on that caseload. Without this, midwives will be hampered by the same time constraints in the new model as they are at present.
Conclusion
Women with a learning disability are disadvantaged by both the health and social care systems and are therefore predisposed to poorer pregnancy outcomes and child protection procedures, leading to the removal of their child. There is the legislative and policy backing to change this situation and the midwife has a role in this. However, in order to translate aspirations into midwifery practice, there is a requirement for improved training and support, and increased time for good care provision. Without this, it is likely that outcomes for women with learning disabilities will not improve, despite legislative and policy drivers, and they will continue to be let down from the outset by services that are unable to meet their needs, loading the die heavily against them becoming successful parents.