Pregnancy and learning disability

Pregnancy is a right for most women. However, for women with learning disabilities fulfilling this right can be complicated. Consideration must be given to their capacity to understand pregnancy and parenting, their safety, and the safety of the child. 

A learning disability is a lifelong condition and is defined as “a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood." (DHSE 2001 - Valuing People - A New Strategy for Learning Disability for the 21st Century). The degree of disability can vary greatly, often as mild, moderate, severe or profound.

Adult and child vulnerabilities and safeguarding considerations should be acknowledged. In 2013, Wilson et al (2013) estimated that between 40 and 60 per cent of parents with a learning disability have their children removed from their care due to being assessed as unable to provide an adequate standard of parenting.

Once a woman becomes pregnant, assessing her needs, her partners needs and that of their family will be a critical step to ensuring a positive outcome for all.

Health talk (2017) provides some valuable insights into how women with learning disabilities were treated during their childbirth experience.

The updated Good practice guidance on working with parents with a learning disability (University of Bristol) states in England that:

‘People with learning disabilities have the right to be supported in their parenting role, just as their children have the right to live in a safe and supportive environment.’ 

The guidance recognised that parents with learning disabilities can be good parents if provided with positive support. The five key features of good practice in working with parents with learning disabilities are: 

1. Accessible information and communication.
2. Clear and coordinated referral and assessment procedures and processes, eligibility criteria and care pathways.
3. Support designed to meet the needs of parents and children based on assessments of their needs and strengths.
4. Long-term support where necessary.
5. Access to independent advocacy. 

All women with learning disabilities will have differing abilities. Some will:

• be able to make informed decisions about relationships, sex, pregnancy, and parenting
• be able to look after themselves and their baby independently, or with family support
• need additional support to ensure that they are safe, and their baby is safe. Early support is paramount, ensuring the right services are engaged at the right time. The safety and welfare of the (unborn) baby is central to that support.
• have the capacity to consent to sex. However this will vary depending on the severity of their learning disability needs. Sex without the capacity to consent would be considered as rape and abuse of a vulnerable person. With a limited level of understanding it would also be likely that a woman in this situation would not be able to consent to being pregnant or being a parent. Conversations around this can be difficult, as pregnancy is a milestone many women aspire to, and not having the capacity to make that informed decision may not take away the desire to be in a sexual relationship, to be pregnant, or to be a parent.  Seeking support from professionals who can assess and advise in these situations would be essential.
• may have the capacity to consent to being in a sexual relationship, but may not have the capacity to consent to being pregnant or being a parent. As above, the limitations on capacity may not mean that there is not a desire for this. 40 to 60 per cent (Baum, S. 2020) of pregnancies where there is a learning disability result in children being separated from their mothers.

Women with learning disabilities should have the same rights as any other woman. Where possible all should be done to support women to be successful parents if this is what they have chosen. This right however is secondary to the safety of the child and the woman’s own safety. Capacity to understand these life changing decisions is an important consideration. 

Malouf et al. ( 2017), in their study with pregnant woman with learning disabilities, reported that the mothers were aware that to succeed as parents they needed to have good support from family or professionals, and several who had been well supported were flourishing. Others described the stress of having their parenting ability formally assessed immediately after birth, and their distress and guilt when they were not allowed to care for their babies.    

The Best beginnings app and webpage also provide helpful tips. 

The Procedure for Assessing and Responding To the Impact of Parental Mental Ill Health on children Tool, developed as part of care at Tees, Esk and Wear Valleys NHS Foundation Trust and can be used to consider the likelihood and/or severity of the impact of an adult’s mental ill health on a child. The attached example birth plans: example 1 and example 2 may also be useful to look at planning for both antenatal and post birth support from a Community LD Nursing Team.