Parents with Learning Disabilities
A learning disability is a permanent life-long condition, which is defined by the Department of Health as:
- A significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence);
- A reduced ability to cope independently (impaired social functioning), which started before adulthood, with a lasting effect on development.
However, many people who have a diagnosed learning disability prefer to use the term 'learning difficulty'. They feel that the term 'learning disability' implies that they cannot learn at all.
There is a far wider group of parents with learning difficulties, who do not have a diagnosis and would not generally fit the eligibility criteria for support services in their own right. Parents with learning difficulties may face a wide range of barriers to bringing up their children successfully, and often recognise that they need practical support and help to enable them to learn to be the best parents possible.
Historically IQ testing was used as an assessment method in an attempt to categorise degrees of learning disability, however, modern assessments use a broader approach to assess strengths and needs, and should be part of a person-centred approach to care and support planning, leading to a person-centred plan describing what is important to and important for the individual to live a good life with as much choice and control as possible.
The additional support needs of parents with learning disabilities include the ability to meet a child's developmental needs, as well as their own; personal care of the child; preparation of meals and drinks; attending to the child's health needs; parental involvement in indoor and outdoor play; support in education and help to identify potential risks to their child(ren).
Where a parent has a learning disability it will be important not to make assumptions about their parental capacity. Having a learning disability does not mean that a person cannot learn new skills. Parents with learning disabilities can be 'good enough' parents when support is put in place.
Some parents with learning disabilities will only need short-term support, such as help with looking after a new baby or learning about child development and childcare tasks. Others, however, will need on-going support. Most may need support at various different points of their family's life cycle.
If services fail to coordinate effectively, parents with learning disabilities are at risk of falling through the gap between the provision of services for children and the provision of services for adults. As a result, some parents may miss out on support services that they need in order to prevent problems from arising. Early help and Family Support services should be considered at an early stage in order to prevent future harm to the child and to promote the child's welfare.
The context in which people with learning disabilities have children is one that has been dominated by the perception of risk and the assumption that their parenting will not be good enough. However, parents with learning disabilities can be 'good enough' parents when appropriate support is put in place. Adults with learning disabilities may need support to develop the understanding, resources, skills and experience to meet the needs of their children. This will be particularly necessary if they are experiencing additional difficulties such as domestic violence and abuse, poor physical or mental health, having a disabled child, substance misuse, social isolation / discrimination, poor housing or poverty.
Neglect through acts of omission rather than commission is a frequently stated concern; ultimately it is the quality of care experienced by the child which determines whether the parenting capacity can be regarded as good enough and whether or not a referral should be made for an assessment by the Children's Service Trust.
Similarly, women with learning disabilities may be Adults at Risk and targets for men who wish to gain access to children for the purpose of sexually abusing them.
Children may end up taking increasing responsibility for caring for themselves and, at times, for their siblings, parents and other family members. A referral to the local Young Carers Support Group may be appropriate.
A learning disability is a lifelong condition, and parents may need long-term support, which will need to change and adapt as the developmental needs of a child changes as they grow. Assessments must therefore consider the implications for the child as they develop throughout childhood and will need to re-evaluate the child's circumstances from time to time. Children may exceed their parent's intellectual and social functioning at a relatively young age.
3. Indicators of Concern
- Does the child take on roles and responsibilities within the home that are inappropriate?
- Does the parent/carer neglect their own and their child's physical and emotional needs?
- Does the learning disability result in chaotic structures within the home with regard to meal and bedtimes, etc.?
- Is there a lack of the recognition of safety for the child?
- Does the parent/carer misuse alcohol or other substances?
- Does the parent/carer's learning disability have implications for the child within school, attending health appointments etc?
- Does the parent/carer's learning disability result in them rejecting or being emotionally unavailable to the child?
- Does the child witness acts of violence or is the child subject to violence?
- Does the wider family understand the learning disability of the parent/carer, and the impact of this on the parent/carer's ability to meet the child's needs?
- Is the wider family able and willing to support the parent/carer so that the child's needs are met?
- 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?
- How the family functions, including conflict, potential family break up etc.
- Is the parent/carer vulnerable to being exploited by other people e.g. financially, providing accommodation?
- Does the parent/carer have difficulty developing and sustaining relationships or have relationships that may present a risk to the child?
- Does the parent have a limited understanding of the child's needs and development including pregnancy, childbirth, and caring for an infant?
- Does the parent/carer have poor parenting experiences from their own parents as a child?
- Does the parent/carer have difficulty accessing health care and other support for themselves or the child?
- In relation to pregnant women, should a pre-birth assessment be arranged?
4. Protection and Action to be Taken
Where a parent with learning disabilities appears not to be able to meet the needs of their child a referral should be made to the Children's Service Trust in line with the Referrals Procedure.
The Children's Service Trust, will undertake a multi-disciplinary assessment using the Assessment Framework triangle, and include input from Adult Services and other relevant agencies. Specialist learning disability and other assessments should be considered as a means to determine whether or not the parents require additional support to enable them to care for the child or whether the level of learning disability is such that it will impair the health or development of the child. Assessments involving families affected by parental learning disability should always include specialist input concerning the impact of learning disability.
All agencies must recognise that their primary concern is to ensure the promotion of the child's welfare, including their protection.
It is important that services understand who is to take the lead on assessments:
- Where there are no welfare concerns but adults need assistance with routine tasks of looking after children, Adult Learning Disability services should take the lead on assessment and care planning;
- Where parents need support in the medium to long term Adult Learning Disability and the Children's Service Trust will jointly co-ordinate assessment and care planning;
- Where intervention is required to prevent children suffering impairment to their health or development or significant harm, the Children's Service Trust will lead assessment and planning with specialised input from Adult Learning Disability services.
It is important for support needs to be recognised at the early stages of the parenting experience. If possible, identification of needs should start when a pregnancy is confirmed.
It is particularly important to avoid the situation where poor standards of parental care, which do not, however, meet the threshold of significant harm to a child, subsequently deteriorate because of a lack of support provided to the parent. It is vital to recognise low levels of need, which, if unaddressed, are likely to lead to difficulties for parents and undermine children's welfare.
Where Section 47 enquiries conclude that there is no actual or likely significant harm it will be important that action is taken to prevent future problems arising.
5. Good Practice
The case of A Local Authority v G (Parent with Learning Disability)  EWFC B94 highlighted the question of whether the parenting that can be offered is good enough if support is provided. However, this obligation does not extend to support that is tantamount to substituted parenting.
The case identified five key features of good practice in working with parents with learning disabilities:
- 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.
The case also highlighted the need for specialist:
Training - specialist training on dealing with parents with a learning disability, emphasising how best to work with the parents and how to deliver the right support.
Accessible information and communication:
Communication - communicating with parents in a way they understand.
This may include:
- Taking more time to explain things;
- Telling parents things more than once and checking their understanding of what has been said;
- Considering in advance how best to prepare for meetings, and discussing with parents whether they would like an Advocate to support them to prepare for the meeting and take part in it;
- Hands-on approaches, such as role-play, modelling, and filming tasks being completed;
- Step by step pictures showing how to undertake a task;
- Repeating tasks regularly and providing opportunities for frequent practice;
- Use of 'props', for example, containers which will hold the right amount of milk.
Parents should be told, in plain language, what any assessment is, what it is for, what it will involve, and what will happen afterwards. They may need to be told more than once, for example, a parent may need to be reminded what happened at the last meeting.
Information about universal services made available to parents and prospective parents should be in formats suitable for people with learning disabilities. This may include:
- Easy Read versions of leaflets, avoiding the use of jargon;
- Audio and/or visual information on CD/DVD/MP3;
- Fully accessible websites;
- Creating opportunities to tell people with learning disabilities, face-to-face, about services for parents and parents-to-be;
- 'Word banks' of words that parents can read and understand, to be used in written communications with the parents.
6. Findings from Research
Good Practice Guidance on Working with Parents with a Learning Disability (2016) (p. 50 et seq) identifies the following:
- Self-directed learning can bring about long-term improvement in parenting skills;
- Group education combined with home-based intervention is more effective than either home-based intervention or a group education programme on its own;
- Parents with learning disabilities value both advocacy services and those which support self-advocacy;
- Good co-ordination and communication between children's and adult services is key to effective interventions;
- Preventative approaches are key to safeguarding and promoting children's welfare;
- Interventions should build on parents' strengths as well as addressing their vulnerabilities;
- Interventions should be based on performance rather than knowledge and should incorporate modelling, practice, feedback and praise;
- Tangible rewards may promote attendance at programmes, rapid acquisition of skills and short-term commitment;
- Other methods of engagement are needed long term;
- Intensive service engagement is more effective than intermittent service engagement;
- Programmes should be adapted to the actual environment in which the skills are needed in order to enable parents to generalise their learning;
- Teaching should be in the home if possible and if not, in as home-like an environment as possible;
- Factors in the family's environment which promote children's resilience should be identified and enhanced;
- The importance of family ties (for most – though not all – parents and their children) should be recognised and no actions taken that damage such ties;
- Interventions should increase the family's experience of social inclusion rather than cause or contribute to their social exclusion.
7. Further Information
The Working Together with Parents Network have produced an update of this guidance – Working Together with Parents Network Good Practice Guidance on Working with Parents with a Learning Disability (2016)