Working with parents who have a learning disability
1.1 Parents with a learning disability are likely to be amongst the more marginalised and vulnerable members of society and may need support from welfare services for a variety of reasons. They might struggle with literacy, everyday practical tasks and abstract concepts such as time, as well as the wide range of social disadvantages common to adults with learning disabilities such as poverty, poor housing and social exclusion.
A definition of a Learning Disability is:
A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence). This refers to a person who has an IQ below 70, assessment and interpretations of psychometric test scores are the remit of a chartered psychologist.
A reduced ability to cope independently (impaired social functioning) - i.e. how an individual copes with every-day demands of community living; impairment of adaptive / social functioning might be considered to be present if s/he needs assistance with survival (eating, drinking, clothing, hygiene and provision of basic comforts) or with social problem solving and social reasoning;
Which started before adulthood, with lasting effect on development – in order for a person to be diagnosed with a Learning Disability their impairment needs to have been present before the age of 18. (This can include a person who has had a brain injury before the age of 18)
For the purposes of this paper the term parent will be used but this would also include carer or guardian.
There are some people who have Learning Difficulties though they or records may state that they have a Learning Disability. A learning difficulty does not affect the general intelligence (IQ) and can be described as having problems of understanding and process certain forms of information whilst a learning disability is linked with overall cognitive impairment. This can include dyslexia, ADHD and Autism. A person who has a Learning Disability may have these issues as well though not everyone with a Learning Difficulty will have a Learning Disability.
2.1 Where a person has a learning disability, they may lack capacity to make decisions however it is important not to make assumptions about their capacity and their ability to parent. Having a learning disability does not mean that a person cannot learn new skills or become a successful parent with the right support.
2.2 The Mental Capacity Act (2005) (MCA) provides a framework to empower and protect people who may lack capacity to make some decisions for themselves. This applies to all individuals from the age of 16, all individuals must be presumed to have capacity unless a capacity assessment has proved otherwise. Each decision to be made are time and decision specific, you cannot make a blanket statement such as a person ‘does not have capacity’ The assessment of capacity needs to be carried out by the person making the decision at that point in time.
2.2.1 For an assessment of capacity, a person must be able to:
- Understand information relating to the decision required (including consequences)
- Retain the information long enough to make a decision
- Use or weigh up (believe and take into account) the information given
- Communicate about the decision in whatever way they communicate
Failure on any one point means the person lacks capacity – but only at that particular time for that specific decision.
2.3 There needs to be consideration as to how the information is relayed; appropriate resources may be required and reasonable adjustments made to ensure you have aided the person with their understanding of the decision. It may be a lack of exposure of education why a person does not demonstrate capacity, in these circumstances as part of relaying information education needs to occur and then reassessment.
2.4 Where you have concerns that a person may lack capacity you should seek advice from within your agency from an appropriate person or refer to MCA guidance /procedures.
2.5 The outcome of a capacity assessment can be that yes, the person does have capacity, and with this the person may have made an unwise but capacitated decision. Or no, the person does not have capacity therefore a best interest decision will need to be made
2.6 Factors to be taken into consideration when assessing a person’s capacity are;
- Do not make assumptions about someone’s best interest merely on the basis of the person’s age or appearance, condition or any aspect of their behaviour
- Is the person lightly to regain capacity if so can the decision wait
- All relevant circumstances should be considered
- Involve the person as fully as possible
- Take into account the individuals past and present wishes and feelings, and any beliefs and values likely to have a bearing on the decision
- Consult as far and as widely as possible
3. Recognition of Learning Disability
3.1 It is not always clear whether a parent has a learning disability, and the following may assist recognition:
- Reference to medical records can offer evidence;
- Personal history involving attendance at special schools;
- Severe difficulties with literacy and/or numeracy;
- Reference to educational records (where it is less than 5 years since leaving school) can also provide evidence.
- Enquiries made of the learning disability register maintained by Adult Social Care;
- Clinical psychologist’s reports or assessments.
- Contacting the local Community Learning Disability Team
4. Working with parents with learning disabilities
4.1 As with any parent, the ability of those who have a learning disability to provide a reasonable standard of care will depend on their own individual abilities, circumstances and the individual needs of the particular child.
4.2 Around 40% of parents with a Learning Disability do not live with their children, the children of parents with a Learning disability are more likely than any other group of children to be removed from their parent’s care
4.3 Learning disabled parents may also experience additional stressors e.g. having a disabled child, domestic abuse, poor physical or mental health, substance misuse, social isolation, poor housing, poverty and a history of growing up in care. Individuals who may pose a risk to children sometimes target parents with learning disabilities, in these situations the children could be vulnerable to abuse and neglect.
4.4 Such stressors, when combined with parental learning disability, are more likely to lead to concerns about the care of children and risk of poorer development of the child.
4.5 Parents with a learning disability may therefore need positive ‘whole family’ support to develop sufficient understanding, resources, skills and experience to meet the needs of their child. With effective, sustained support over time adjusted to meet the changing developmental needs of a growing family, learning disabled parents are potentially able to provide good enough care.
4.6 There are five key features of good practice in working with parents with learning disabilities:
- Use of accessible information and communication
- Clear and co-ordinated referral and assessment procedures and processes, eligibility criteria and care pathways
- Support designed to meet the needs of parents and children based on assessments of their needs and strengths
- Long-term support where necessary
- Access to independent advocacy
5. Considering the impact of parental learning disability or learning difficulty on children:
5.1 The following is to support you when considering the impact of parental learning disability or learning difficulty on children; it is not intended to replace professional judgement. You need to think about the nature of risk but also the protective factors for the child.
Examples of protective factors include:
- There is another parent or carer that can be depended upon to consistently meet the needs of the child.
- The parent has insight into their ability, can take action to significantly reduce the impact of their difficulties on the child and is sufficiently supported.
- Effective consistent engagement with support services.
5.2 Children of parents with learning disabilities may assume some level of responsibility of looking after their parent and /or siblings, one or more of whom may be learning disabled.
5.3 Considerations when assessing the risk to children:
- Parents ability to understand information when appropriate resources are used
- Do parents have capacity to make decisions for themselves and the UBB/child?
- Do the parents have an understanding of the child's needs and development including pregnancy, childbirth, and caring for an infant when appropriate resources are used?
- Have parents had other children who have suffered significant harm or who have been removed from their care?
- Is there any co-existing domestic abuse, substance misuse, alcohol abuse or mental illness?
- Is there extended family/friends available to offer support and can be depended upon to meet the needs of the child?
- Does the wider family understand the learning disability of the parent, and the impact of this on the parent ability to meet the child's needs?
- How does the family functions – is there any conflict, potential family break up etc?
- Is the child is the parent’s carer or carer for younger siblings
- Does the child have additional needs of their own which makes caring for them more complex?
- Does the child take on roles and responsibilities within the home that are inappropriate?
- Does the parent neglect their own physical and emotional needs?
- Are the child’s physical and emotional needs being met?
- Does the parent have difficulty accessing health care and other support for themselves or the child?
- Are parents able to provide structure and boundaries within the home?
- Is there recognition of safety for the child?
- Is the child being taken to health appointments and attending school regularly?
- Does culture, ethnicity, religion, or any other factor relating to the family have implications on their understanding of the learning disability and the potential impact on the child?
- Does the parent have difficulty developing and sustaining relationships or have relationships that may present a risk to the child?
- Are parents vulnerable to exploitation from family, friends or the wider community?
- Does the parent have poor parenting experiences from their own parents as a child?
5.4 When concerns are assessed as high the parents’ learning disability is highly likely to have a direct impact on the safety and well-being of the child, due to this a safeguarding referral should be made to Children’s Social care. Follow Tees Safeguarding Child Protection Procedures
5.5 Where you have concerns that a person may lack capacity you should seek advice from within your agency from an appropriate person or refer to MCA guidance/procedures.
The MCA says:
- assume a person has the capacity to make a decision themselves, unless it's proved otherwise
- wherever possible, help people to make their own decisions
- do not treat a person as lacking the capacity to make a decision just because they make an unwise decision
- if you make a decision for someone who does not have capacity, it must be in their best interests
- treatment and care provided to someone who lacks capacity should be the least restrictive of their basic rights and freedoms
5.6 Who assesses mental capacity? Normally, the person who is involved with the particular decision which needs to be made is the one who would assess mental capacity. If the decision is a complex one then a professional opinion might be necessary.
6. Useful links on this website:
- PAMIC – Procedure for assessing and responding to the impact of parental mental ill health on children
7. Further Information
- Good Practice on working with parents with a Learning Disability (2007) & Update (2021)
- Working together to Safeguard Children July 2018 (updated 2022)
- The Care Act 2014 Care and Support Statutory Guidance, Department of Health
- What To Do If You’re Worried A Child Is Being Abused – advice for practitioners. HM Government, 2015
- Mental Capacity Act (Gov.uk 2005)
- Supporting Parents with a Learning Disability through the Child Protection System (2017)