4.18 Learning Difficulties in Parents

1. Definitions

A learning disability is defined by the Department of Health and Social Care (DHSC) 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.

A learning disability is different for everyone. The degree of disability can vary greatly, and learning disabilities can be classified as mild, moderate, severe or profound. In all cases, a learning disability is a lifelong condition and cannot be cured. People who are known to learning disability services are likely to be those with a more significant learning disability.

A learning disability is not a physical disability. It is caused by something which affects the development of the brain either before birth, during birth or in early childhood.

There are a number of conditions and neurological disorders that often involve or cause some type of learning disability, including Down’s syndrome, autism, meningitis, epilepsy or cerebral palsy.

Possible causes of learning disabilities include:

• an inherited condition – for example, Fragile X syndrome;
• abnormal chromosomes – for example, Down’s syndrome or Turner syndrome;
• exposure to environmental toxins or infections and illness during pregnancy;
• a very premature birth;
• complications during birth, resulting in a lack of oxygen to the baby’s brain;
• illness – for example meningitis or measles, or injury or trauma to the brain in early childhood.

Sometimes the cause of a learning disability remains unknown.

A particular level of IQ cannot be taken as the only defining characteristic of learning disability, and people can have different ability levels across the different components of IQ and other tests. Sometimes it can be difficult to clearly distinguish between those parents who have learning disabilities and those who do not. In the context of parenting, it may be more helpful for practitioners to focus on identifying support needs associated with the impact of the parent’s learning disability, rather than focusing on the definition of learning disability.

A learning disability is different to a learning difficulty, which is a reduced intellectual ability for a specific form of learning and includes conditions such as dyslexia (reading), dyspraxia (affecting physical co-ordination) and attention deficit hyperactivity disorder (ADHD). A person with a learning disability may also have one or more learning difficulties.  However, some people who have the label ‘learning disability’ prefer to be called ‘people with learning difficulties’. Practitioners should be sensitive to how people define and describe themselves and use language that parents are comfortable with in their contact with them.

2. Issues

Often those parents with learning disabilities who are in contact with social care services experience a range of difficulties. They may have particularly high levels of need, and present as complex cases where it can be difficult to disentangle the competing concerns.

Compared to people without a learning disability, people with a learning disability tend to experience poorer physical and mental health and reduced life expectancy. They are also:

• less likely to be working in paid employment;
• more likely to live in poverty;
• more likely to experience chronic loneliness; and
• more likely to be bullied and discriminated against.

Parents with learning disabilities may experience a range of needs and difficulties, including a physical or sensory impairment and / or long-term health condition, mental health problems or substance misuse problems and experience domestic abuse.

Some parents with learning disabilities experience significant housing problems, including homelessness, harassment from neighbours and difficulties in maintaining a tenancy.

The same principles of safeguarding and promoting the welfare of children should be applied to the children of parents with learning disabilities as to the children of non-learning disabled parents. However, working with and assessing parents with learning disabilities often requires a specialised response such as different approaches to communication and assessment.

Lack of a formal diagnosis of learning disability may affect a parent’s eligibility for some services, but a parent who presents as having difficulty with, or being unable to, read, write, budget, deal with numbers or abstract concepts, process information, retain and apply it etc. will almost certainly require support to enable them to raise their children safely and well. This is likely to mean allowing more time for a parent with a learning disability to understand what is happening and appropriate and effective communication so they can participate fully in the process.

Effective joint working across all involved agencies is essential, in particular between adult and children’s services where they are supporting parents and children respectively.

Young parents and parents-to-be with learning disabilities may be in transition between children’s and adult services.

Good Practice Guidance on Working with Parents with a Learning Disability (Working Together with Parents Network) identifies five key features of good practice in working with parents with learning disabilities:

1. provision of accessible information and communication;
2. clear and coordinated referral and assessment procedures and processes, eligibility criteria and care pathways;
3. support which is 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.

3. Accessible Information and Communication

Accessible information and communication are crucial to enabling parents with learning disabilities to engage with services and therefore to maximise the chances of children’s needs being met.

Parents should be provided with assistance to enable them to understand what is happening and to express their views. Information may well need to be provided more than once in order for parents to understand what is going on.

Information should be provided in a format which is accessible to them, for example:

• easy-read versions of leaflets, letters and other written information;
• audio and / or visual information on CD / DVD / YouTube;
• a parent’s ‘word bank’ which includes the words that parents can read and understand. All subsequent letters to parents and any papers they need to see, should be written using words in the ‘bank’;
• Talkback can be contacted to provide support for people with learning disabilities and autism in Buckinghamshire.

Where a child protection plan is drawn up and this involves action to be taken by parents, parents should be fully supported to understand what is required of them and what support is available to help achieve this.

Effective, two-way communication is particularly important in meetings involving a number of different professionals (such as child protection conferences). Information and communication must be accessible, jargon should be avoided and parents should have someone to support them to prepare for the meeting and take part in it, if this is what they want.

4. Safeguarding Children

Concerns about the ability of parents with learning disabilities to adequately care for and protect their children may arise during antenatal and postnatal care.

Identification of needs should start when a pregnancy is confirmed, with early, appropriately tailored assessments carried out to identify the support which will be needed to look after a new baby. Recognising and addressing support needs at the earliest stages of the parenting experience may help to prevent difficulties for parents which undermine children’s welfare.

Adult learning disability services should take steps to ensure that people with learning disabilities who become parents know about the support available. Such services are well-placed to provide new parents and parents-to-be with accessible information about both universal and specialist services. Children’s social care should also take steps to ensure that adults with learning disabilities who become parents know about the support available to help them with their responsibilities as parents.

It is good practice that, as a general rule, referrals relating to the needs of parents with learning disabilities should be directed to learning disability services. Where there are concerns about children’s welfare a referral should also be made to children’s social care (see Referrals chapter). If a referral is made directly to children’s services, and it then becomes apparent that a parent has a learning disability, a referral should then also be made to adult learning disability services.

Good practice is promoted where there is clear agreement between adult and children’s social care as to the circumstances in which single or joint assessments are required and who should take the lead.

For example:

• adult learning disability services have responsibilities for assessment and care planning when there are no child welfare concerns and where the parent needs assistance with the routine tasks of looking after children;
• adult learning disability and children’s services jointly coordinate assessment and care planning where parents need support in the medium to long term to enable them to meet their children’s developmental needs;
• children’s services lead assessment and planning (with specialist input from adult learning disability services) where intervention is required to prevent children suffering impairment to their health or development or significant harm and/or there is a disabled child in the family.

Assessments involving families affected by parental learning disability should always include specialist input concerning the impact of learning disability. Where there are other difficulties such as mental health and/or physical health problems, domestic abuse or substance misuse, assessments should also include, where appropriate, specialist input on these issues. Assessments should also address the possible vulnerability of the learning disabled parent and their own need to be protected from harm. Parents should be given information – in a format suitable to them – about why an assessment is being carried out, what it will involve, and what might happen as a result.

Parents should be invited to attend child protection conferences and support provided to enable them to participate fully. Careful consideration should be given to ensuring that all communication associated with the child protection conference – from invitation and the conduct of the meeting through to the minutes / notes of the meeting – is accessible to the parent with learning disabilities. Information should be sought, from the parent and / or their advocate, about what communication format is accessible to them.

Good practice will be promoted by:

• clarity about rights, roles and responsibilities, including the legal basis for action and the entitlement of parents to support under both children’s and care legislation;
• timely and effective information sharing between relevant agencies and professionals;
• timely and effective involvement of parents and children and the provision of independent advocacy;
• in-depth assessments, including appropriate specialist input from both children’s and adult services.

Key issues for parents with learning disabilities involved in pre-proceedings and court proceedings are their needs for accessible information, support of an independent advocate, enough time to understand what is going on, to be fully involved in any assessments and care planning, and to have the chance to learn and demonstrate improved parenting capacity.

Parents whose children are the subject of section 47 enquiries should always be given early information about independent sources of advice and advocacy. Where possible, independent advocates should have the necessary skills and expertise concerning both learning disability and child protection.

5. Review and Ongoing Support

Where section 47 enquiries conclude that a child is not at risk, or not at continuing risk, of significant harm, it will be important that, where appropriate, action is taken – under section 17 of the Children Act 1989 – to prevent future problems arising. It is particularly important to avoid the situation where poor standards of parental care, which do not meet the threshold of significant harm to a child, subsequently deteriorate because of a lack of support provided to the parent. It is also important to provide any necessary support when a child is no longer the subject of a child protection plan, in order to prevent a subsequent deterioration in parental care.

Families affected by parental learning disability are likely to have an ongoing need for support, and where a child protection plan is not considered necessary, another appropriate pathway should be considered.

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 ongoing support. Most may need support at various points of their family’s life cycle. However, case-law has established that the level of support needed to ensure ‘good enough parenting’ should not be so great as to amount to ‘substitute parenting’.