In this page
The Welsh Government has committed to help children remain in the care of their families and provide care for children who require it closer to home. See Welsh Government's report on this, Improving Outcomes for Children Programme: legacy report.
Reducing the number of children in Wales who are being taken into care remains a key priority and local authorities in Wales have been working to deliver their 3-year reduction expectation plans to support reductions. This includes the number of children removed from parent(s) who have a learning disability. Accordingly, the Institute of Public Care were commissioned to undertake research looking at the number of children in Wales removed from parents with learning disabilities and the reasons behind their removal. View the Institute of Public Care's research on children removed from parents with learning disabilities.
Recommendations from that research included development of national guidance to support social workers to better identify and support families where a parent has a learning disability. This document has, therefore, been commissioned by Welsh Government to address this recommendation.
The following sources have been utilised in developing this guidance to identify both the challenges experienced by families and those who support them, and good practice in providing support:
- the research undertaken by The Institute of Public Care
- a scoping review of relevant research, policy, and guidance
- discussion with key stakeholders at a national and international level
- interviews with parents with learning disabilities
- focus groups and individual interviews with a range of stakeholders including social work managers and practitioners
- feedback from stakeholders regarding early drafts of this document
Throughout, quotes are included from participants in both the parent interviews (referred to as ‘parents’) and the stakeholder and practitioner interviews/focus groups (referred to as ‘participants’) to make clear the links between the guidance and the experiences of parents and practitioners.
The guidance is organised under several key headings namely:
- the underpinning values and principles
- identifying parents with learning disabilities
- effective communication
- independent advocacy
- planning and delivering effective support
- support in court proceedings
- collaboration, coordination, and continuity
- organisational supports
Whilst presented separately these areas are inter-related and need to be considered alongside each other. For example, establishing effective communication is essential from the outset of engagement with families and is needed throughout assessment, planning and delivery of support. The provision of independent advocacy can support this and effective practice with families requires appropriate organisational supports. Cross referencing will, therefore, be used where appropriate in this document.
Underpinning values, principles and legislation
Several key values and principles underpin the guidance outlined in this document.
First the importance of respect for rights of both children and their parents and in particular the right to respect for private and family life as outlined in Human Rights Act (1998). It is recognised, however, that at times there may be tensions between the rights of the parents and the rights of the child.
Second, whilst service provision is often focused on either the child or the parents, the need to focus on the family is central to this guidance. This requires effective collaboration and coordination within, and between, services.
People with learning disabilities are often judged by what they are unable to do rather than what they can do and what they might achieve. The importance of adopting a strengths-based approach, where the capabilities of parents are acknowledged, and support is focused on building on strengths to achieve desired outcomes is therefore stressed. This is consistent with the Social Services and Well-being (Wales) Act (2014).
Many parents with a learning disability raise their families effectively without external support. However, others may require additional support and the possibility of positive outcomes being achieved is increased if support is provided proactively rather than only when a crisis occurs. The importance of early intervention and a proactive approach therefore underpins this guidance.
These values and principles are consistent with the current legal and policy framework in Wales (see Appendix 1). Reference will be made at key points in this document to specific implications when applying such legislation to support families where a parent has a learning disability.
Identifying parents with learning disabilities
The first social worker never really knew that I had a learning disability and the second social worker found out, and has been really understanding, takes a lot more time to speak to me and gives me more time to try to understand stuff.
I told the social worker I had a mild learning disability cos I knew from school, but they didn’t do anything different the only one who helped was my advocate and [name of support worker], they would ask for longer time and explain things to me.
To provide timely and appropriate support it is important to identify where a parent may have a learning disability. Most definitions indicate that for an individual to be considered to have a learning disability three key indicators should be present:
- they have reduced intellectual ability; this means an individual may have difficulties in understanding new or complex information – for example they may have difficulties in understanding instructions, problem solving, retaining information and abstract thinking; some services may apply the criterion of having an IQ of 70 or less
- they have difficulties with everyday living activities and may require support with tasks such as meeting hygiene, nutritional and safety needs
- these difficulties commenced before adulthood (before the age of 18) and affect them throughout their life
Whilst learning disability is a lifelong condition, individuals can learn and develop new skills if they receive the right opportunities and support.
It is important to note that the Welsh Government advocate use of the social model of disability. This recognises that whilst people may have different impairments (such as a learning disability) they can be disabled by a range of social, financial, physical, and attitudinal barriers that limit their inclusion and participation in society. When considering the needs of parents with a learning disability it is therefore important to understand how these barriers impact upon their parenting. Throughout this document the focus is therefore on recognising and addressing these needs.
The term ‘learning disability’ encompasses people with a wide range of abilities, strengths and needs. Sometimes reference is made to an individual having ‘mild’, ‘moderate’ ‘severe’ or ‘profound’ learning disabilities. Where someone has severe or profound learning disabilities, they are likely to require significant levels of support with many or all aspects of everyday living. They may also not communicate verbally or have only a limited vocabulary.
Where, however, someone has a mild learning disability this may not be immediately evident to others. They may (for example) have challenges with some aspects of everyday living such as reading and budgeting but have developed ways of managing and coping independently. They may not identify with the ‘label’ of learning disabilities and might be reluctant to disclose to others that they experience difficulties for fear of stigma. This can particularly be the case where children are involved since parents may fear that their children will automatically be removed from their care if others are aware of their challenges.
Reference may be made to the term ‘learning difficulties’ either by services or by individuals themselves. The terms ‘learning disabilities’ and ‘learning difficulties' should not be used interchangeably but, in practice, this may occur particularly where an individual prefers to be referred to as having learning difficulties. Practitioners need to be alert to this and, whilst respecting client preferences regarding terminology, be able to distinguish between the two. The term 'learning difficulties’ is often used where an individual has difficulties in learning but does not meet the criteria for having a learning disability (see above) and encompasses neurodevelopmental conditions such as autism, dyslexia, dyspraxia, and dyscalculia which can impact on adaptive functioning. Whilst these conditions can co-exist with a learning disability, where the individual does not also have a significant impairment of intellectual functioning, they are considered to have a learning difficulty rather than a learning disability
Sometimes a referral will be received where one or more of the parents have been formally assessed as having a learning disability and they may also be known to the Adult Community Learning Disability Team. However, most adults with mild learning disabilities are not known to adult learning disability services. Their GP records may record such information and can be helpful when seeking to determine if an individual has a learning disability.
In the absence of such information then careful questioning may be required to identify whether a parent has a learning disability. Sometimes sensitively posing the question ‘Has anyone ever suggested that you might have a learning disability?” will lead to a positive response from parents. They may, however, be reluctant to disclose this and it is important to stress that the reason for seeking such information is to try and identify how they can best be supported. Some other indicators might include:
- the parent reports attending a special school, receiving specialist support during their education, or attending a specialist unit in an further education college
- the parent reports they have difficulties in key skills such as reading, writing, numeracy
- the parent appears to have difficulty in understanding and retaining information
- the parent has a copy of the All-Wales Health Profile detailing their health, communication, and support needs
Factors other than a learning disability may also impact on how parents present. These include:
- other co-existing conditions such as autism, ADHD, or mental health problems (please see Appendix 2 for additional resources)
- sensory impairments
- linguistic differences where the parent’s first language is not Welsh / English
- cultural differences
It is important that the potential presence of learning disabilities is identified as early as possible in the process of engaging with the family to ensure appropriate assessment and the delivery of effective and timely support. Screening tools are available that can, with the parent’s consent, be used to assist with identifying the presence of learning disabilities. These include the Child and Adolescent Intellectual Disability Screening Questionnaire (CAIDS-Q) and the Learning Disability Screening Questionnaire (LDSQ) (see Appendix 2). Whilst not providing a formal diagnosis they can be helpful in ensuring that appropriate support is provided.
A formal assessment / diagnosis may also be required, and this may be facilitated by referral to the Adult Community Learning Disability Team. However, there can be a waiting list for such assessments, and it is important that there is no delay in providing support for the family.
Where, therefore, there is a lack of a formal diagnosis, but the presentation of the parents suggests that they may have a learning disability, then good practice would be to apply the principles in this guidance whilst further assessments are undertaken.
perhaps…not making the decision are they learning disabled, but just giving them that support which will allow, if they have a learning disability, to be better supported without … making people feel like they're stigmatised by having that label. Just give them the help and, you know, you don't have to say out loud necessarily that this person has a learning disability.
Good practice points:
- If the parent has a confirmed learning disability, this should inform subsequent family assessment and the provision of support.
- Where a parent presents as having a learning disability, but does not have a diagnosis and/or is not known to the Adult Community Learning Disability Team, then (with the parent’s consent) use of a screening tool should be considered.
- The provision of appropriate support should not be delayed until a formal diagnosis/assessment is obtained.
- The guidance included in this document should be applied whenever a parent presents as having a possible learning disability.
Communication - it's not a “nice to have” it's an absolute essential, it’s a human right. It's full participation …the right of the parents to have effective two-way communication so that not only can they understand what is being told and expected of them, but what they wish to say and communicate is equally able to be communicated
Effective two-way communication is an essential basis for working with all families. However, as the quote above indicates, where a parent has a learning disability it is even more important that careful attention is given to this from the first contact due to the challenges they may face with understanding and retaining information. Attention needs to be given to making any adaptations (reasonable adjustments) required for their views, wishes and concerns to be heard, so they can understand what is being communicated to them, and what is required of them. It is also important to recognise how language barriers and/ or co-existing conditions such as autism may impact on communication (see Appendix 2 for further resources in relation to autism).
The first stage of building effective communication is to develop trust. This is in keeping with a relationship-based approach to social work but can be challenging if parents have a history of negative experiences with services. They may also be fearful of the outcomes of the current involvement.
So, my communication has always been to build relationships.
The best thing about what she does is to reassure you and support you, she yeah, she never judged me and my husband and said she knew where we were coming from... The best thing was she was always upfront and honest, she literally told us what was going on
Building a relationship with the parent(s) is key to effective communication to achieve the best possible outcomes for all family members. Parents with a learning disability may prefer certain ways of communication and a good starting point is to ask them how they would like to be communicated with, what would help them to say what they want to say, and reach agreement on how communication should happen.
I feel frustrated with all the services, and I cannot get myself listened to. They are not hearing what I have to say and then they say I’m hostile and not getting anywhere.
The best support to get from the social worker is for them to just take the time to sit there, whether that's over the phone or whether that's face to face and actually listen to the person they want to help.
Parents with learning disabilities may experience several barriers to expressing their views and to getting their views listened to. These include:
- the preconceptions of others
- power imbalances
- fear and anxiety
- a history of not being listened to
- a history of other people speaking for them
- limited vocabulary
It is also important to acknowledge that the COVID-19 pandemic has led to changes in communication with interaction often occurring on-line. Whilst this can be challenging for many people it can present additional challenges for parents with a learning disability. They may not have ready access to appropriate IT equipment and/ or they may not have the knowledge and skills to utilise it. Reading body language and other cues is more difficult on-line, and it is even more difficult to raise questions and concerns. Where on-line communication is unavoidable then parents should be provided with in person support to assist in preparing for, engaging in, and debriefing from such meetings.
And 'cause all the meetings are taking place on Teams as well, sometimes you know it's quite difficult when somebody's talking. You can't actually see the person; you can't see their body language and that sometimes the language that they're using. They're using professional language quite, you know, professional terms, a lot of different letters and short words for things and things like that. We went into that meeting blind with a duty social worker, things were brought up which were never discussed with the us before.
Good practice points:
- Ask the parents how they wish to be communicated with and agree how communication will be achieved.
- Ask ‘what works best for you?’
- Ensure that you ‘listen’ not only to what is said but also to what is communicated through body language, facial expression etc.
- Give parents ‘permission’ to express views by actively seeking their opinions and checking if there is anything that they wish to say.
- Avoid the use of ‘jargon’ where possible and (where this is unavoidable) ensure that a plain language explanation is given.
- See Appendix 2 for some resources for the above point.
- Provide information in formats that support parents to understand and retain it.
- This might include providing information in Easy Read format, the use of signing or symbols, providing audio recordings.
- Pay attention to the quantity of information provided at any one time and its pace to promote understanding and to avoid information overload.
- Check understanding of information provided - both your understanding of what the parents have said and the parents’ understanding of what has been said to them.
- Check retention of information – for example checking at each visit what was discussed at the last.
- Provide support to assist parents with retaining and acting on information such as sending reminder texts or phone calls, using pictorial information and so on.
- Facilitate access to an independent advocate for the parents to provide additional support (and see section 5 below).
Central to the Social Services and Well-being (Wales) Act (2014) is the importance of voice, control, and advocacy as key to ensuring that individuals can engage and participate in the assessment and meeting of their needs. See Part 10 of the Advocacy Services code of practice. Individuals may identify their own advocates (such as family and friends) but in certain circumstances independent, appropriately trained, professional advocates (with an understanding of the needs of people with learning disabilities) may be required. For parents with a learning disability support from independent advocacy is viewed as a key element of best practice, and should be provided as soon as possible in the process of engaging with families. See Bristol University's Working Together with Parents Good Practice Guidelines.
The role of the independent advocate is different to that of a court appointed intermediary (see Section 8).
Absolutely I, I can't see how they would function without an advocate. And I think it needs to be the without that bias of “I'm working with social services” or “I'm in health” … It needs somebody that is completely independent and just there for the person and can help them navigate.
Advocacy has several elements each of which has implications when providing effective support for parents with a learning disability. Advocates can assist parents with:
- understanding processes – they can spend time with the parents to assist them with understanding what is happening, what is required of them, and the timescales involved; this can involve adapting information into a format or timescale that is accessible to parents; being independent, they are there to support the parents
- communicating views, wishes and feelings – when interacting with an official body such as a local authority there are huge power differentials; parents may be fearful of speaking up and/or have difficulties in expressing themselves clearly particularly where a case goes to court (see Section 8); an independent advocate can spend time with parents before official meetings, and court appearances to work out what it is they want to say, and what questions they want to ask
- understanding how needs can be met by the Local Authority or otherwise – parents may be reluctant to ask for support fearing that this will be viewed as a failure on their part; an independent advocate can help parents be aware of the supports that are available to them and facilitate access to such support
- making decisions about care and support - an independent advocate can break complex information down and support parents to explore potential courses of action (and their consequences) in ways accessible to, and understandable by, the parent
- understanding their rights – independent advocates can support parents to understand their rights, highlight where their rights are being overlooked, and support them in seeking redress
- challenging decisions or processes – parents may be unhappy with decisions made or processes followed but feel unable to challenge these; an independent advocate can assist by clarifying with them the nature of their concerns, support them in raising these through the appropriate channels or (with the parents’ permission) raise them on their behalf; they can also provide support to assist understanding of why a particular decision has been made or process followed
- assist in understanding safeguarding issues – they can support parents to understand safeguarding concerns, the actions required, and the outcomes that need to be achieved
Through fulfilling the above roles, independent advocates can make an important contribution to mitigating risk. They also provide support for other professionals working with the family through, for example, facilitating and supporting communication.
Well, my son moved school and his behaviour was bad then they started coming in more. He was difficult in school and at home. I think they should have been more involved instead of just meetings, at the beginning I did not know what was going on but then I got an advocate and they helped me a lot.
one family has got an advocate working with them and the social worker. So that everything that is said to them is said to them through the advocate in a way they understand.
Good practice points:
- Parents with a learning disability should be made aware of independent advocacy services at the earliest opportunity and supported to access them if they wish.
- Independent advocates should have both experience of working with people with a learning disability and experience and understanding of child protection proceedings.
- Independent advocates should be involved as soon as possible to ensure parents receive support during assessment and any subsequent court proceedings.
- It is not acceptable for parents to meet an advocate for the first time immediately before entering a court.
- Independent advocates should work with parents with a learning disability over a period to promote continuity, greater understanding of the parents’ strengths and wishes, and to promote the trust required for an effective advocacy relationship.
- It is essential that specialist independent advocacy services for parents with a learning disability are available and funded.
The principles of assessment are set out in the Social Services and Well-Being (Wales) Act (2014) Part 3 Code of Practice. The purpose of assessment is detailed there as being to understand the needs, capacity, resources, and outcomes that individuals need to achieve and then to use this information to determine how they can best be supported to achieve these outcomes (Sect 11). Five key elements are required in the assessment for this to be achieved:
- assess and have regard to the person’s circumstances
- have regard to their personal outcomes
- assess and have regard to any barriers to achieving those outcomes
- assess and have regard to any risks to the person or to other persons if those outcomes are not achieved
- assess and have regard to the person’s strengths and capabilities.
When working with families where a parent has learning disabilities, particularly where intervention is in response to concerns being raised in relation to the welfare of children, it is important to assess not only the needs of the children but also the needs of the parents and the needs of the family unit.
Parents may feel threatened by the process of assessment, particularly where safeguarding concerns have been raised. It is important, therefore, that assessment is understood as a means of identifying the need for support and that efforts are made to develop trust. Time needs to be taken to explain processes and why they are occurring in ways the parents can understand. It may be helpful to develop an agreement as to how the assessment will proceed.
before I start an assessment, I go and visit parents and agree how their assessment is to be conducted. It sounds really basic …but it adds so much value… we talk about setting (ground rules) …I'm not going to use jargon, and if I do use jargon, you can tell me to stop. Then we settle on a safe word so, if people are getting emotional, or if they're becoming confused or overwhelmed, they can say the same word and we stop immediately. … you're giving them permission, empowering… just to always say well every half an hour I'm going to ask you, if you want to have a break, so that we can stop, so that you can get up.
This current guidance supplements that set out in the Code of Practice and highlights additional considerations that are important when assessing a family where parents(s) have learning disabilities. The key areas to be considered are the when, who, what, where and how of assessment.
I'm always surprised…how late in the process…that we do those assessments and how many assumptions have been made about parents’ ability prior to that. You know, when you get the referral, we speak to the social worker…Let's go through the, the form, let's see what their needs are…I'm always surprised when we've had maybe months and months of working with the family and yet I'm still uncovering like new information and to me, I think those assessments should be done much earlier on, and they would inform then any interventions.
When: Timely assessment is always important, but this is particularly the case where parents have a learning disability since they may take longer to develop skills and require additional support to understand and retain new and complex information. A delay in assessment may lead to a delay in providing appropriate support and reduce the time available for parents to develop the knowledge and skills they may need to appropriately care for their child/children.
This is even more urgent where concerns have been expressed regarding the welfare of the child and where parents are required to demonstrate improvements within a specified time. For example, the Public Law Outline (PLO) process sets out a 26-week timescale starting from the local authority making their application and this 26-week period may commence before the court hearings. Any delay in assessment and provision of appropriate support may therefore make achievement of required outcomes impossible for the parents within this timescale
Ideally assessment would take place as soon as a pregnancy is confirmed to ensure that appropriate supports are put in place and to provide parents with as much time as possible to learn any new knowledge and skills. Where this is not achieveable then the process should be commenced as soon as possible. It is also important to remember that capacity may vary over time and hence assessment needs to be viewed as a process rather than an event. It may be necessary to reassess as the developmental needs of the child/ children change and when family circumstances alter. Comprehensive assessment is also essential when seeking to reunite families and return children to the family home.
Who: In considering the ‘who’ of assessment both who should conduct the assessment and who should be present are important. The assessor should be someone with experience in working with adults with a learning disability so that they have the knowledge and skills required to understand and adjust to the communication needs of the parents. For example, it may be necessary to be skilled in rephrasing questions and in adapting assessments to ensure that parents both understand what is being asked of them and to enable them to express their views (see Section 4). The assessor should also be appropriately trained in the use of any specialist assessment tools. The Adult Community Learning Disability Team and other professionals such as the GP or Health Visitor may be helpful either in terms of providing advice or in undertaking a joint assessment.
I think there's a place for joint assessment really, rather than it just being one specific place you know with the team to do it, and I think that kind of helped to address power imbalances, really…Yeah, the welfare of the child is paramount, isn't it? And that's…always going to be the case. But I think the struggles that people with learning disabilities (face) get lost in that sometimes and I think they need to have that person there with them as well to complete their assessments.
PAMs [assessment of parenting capacity] assessments to be done by people that have understanding of learning disability. I've worked with, two out of nine, only two of the assessors have ever had a full understanding and experience of working with people with a learning disability…I don't know what area of work they've come from…they go through the PAMs assessment and it's just a checklist…they make judgments without questioning...You know the parents are not questioned as to why they've done something, or ”‘yeah, why do you think that?” Yeah, so it's to me it's not an assessment where parents are participating.
The parents and (where appropriate) the child/children should be active participants in the assessment process and here it is important to be aware of the requirements of the Mental Capacity Act (2005) regarding assessment of capacity. With agreement of the parents, it may also be helpful for members of the extended family to be involved particularly where they are offering direct support to the family. Other professionals supporting the family might usefully be involved and, most importantly, it would be helpful to ensure that the parents have an independent advocate for both moral and communication support (see Section 5).
What: The Code of Practice (2015: p35) provides a framework for the assessment of children and their families which comprises three key elements:
- The child’s development needs
- Parenting capacity
- Family and environmental factors
Each of these is essential when assessing a family where parent(s) have a learning disability. It is important to consider the child’s developmental stage, their support and care needs, as well as the capacity of the parent to meet such needs (either currently, with education, or with direct support). The needs of a baby are different to those of a toddler and different again to those of a teenager and whilst parents may have (or acquire) the capacity to care at one stage in a child’s development they may face difficulties at another. As noted earlier in this guidance they may have difficulties with understanding new or complex information and/ or transferring learning from one context to another. Re-assessment may therefore be needed at different stages in the family lifecycle.
It is important that any concerns the parents have regarding their child’s development are listened and responded to so that an accurate understanding of the family’s needs can be obtained, and appropriate support provided.
All her life I have told professionals that there is something not right, but I was always blamed…
It turns out that [name of daughter] has a genetic condition, which means she has a learning disability … I have told every single social worker about this but they never listened to me. .. Always told bad parenting. I have been fighting since she was 3 years of age.
…my boy has ADHD and we noticed something wrong from the beginning. No one listened to it, they kept putting it to one side…Whereas we spotted it straight away that we knew something wasn't right…We were telling the professionals something wasn't right…We told the health visitor, we told the school, we told all the professionals, the doctor something is not right with our son. They said it us, that me and my husband were not keeping an eye on him. It got to the point where he broke his collarbone as he was rocking the highchair, and he fell out. But no, that was due because we weren't keeping an eye on him. What upsets me and my husband is the fact that they didn't listen, and they didn't listen to me and [name of partner] in the first place.
As children grow older, they may take on a caring role within the family. When assessing the family, it is therefore important to consider the extent to which this impacts on their developmental needs.
To determine parenting capacity, it may be necessary to undertake a more in depth, specialist assessment. The most used assessment tool is the Parenting Assessment Manual (usually referred to as PAMs). This is conducted over several weeks and comprises assessment of knowledge and skills, along with observation of a range of parenting skills. Areas assessed include knowledge of dangers and risks, meeting hygiene and nutritional needs and behavioural management. The PAMs should not be used to simply provide evidence of what parents cannot (currently) do: it should instead provide a basis for the provision of support and/or teaching to enhance their capacity to care for their child. As part of the assessment the parent(s) should be asked to identify areas where they require support.
The only thing was the PAMS assessment, and that was not suitable for me. it was trying to do things within a time, and they didn’t change the time for me. and then the advocate fought for extra time for me. the social workers are under strict time scales. They used to say stuff and I was like “what are you on about?”
An alternative assessment to PAMS is Parent Assess (see Appendix 2). This assessment focuses on five key areas:
- the child’s experience of being parented – including how the parent meets physical and emotional needs
- the parent’s daily living skills
- parental functioning – how their personal history impacts on parenting, their ability to manage change and decision making, and how they manage risk
- specific issues such as domestic violence, drug, and alcohol issues
- supports – if gaps are identified in any of the above areas, then the parent’s support network and their ability to access that network are considered
Parent Assess encompasses the three elements of family assessment advocated by the Social Services and Well-being (Wales) Act (2014). Evidence is gathered using a range of approaches that include working directly with the parent and speaking with others including (where appropriate) the child. The assessment is scored using a ‘traffic light’ system where green indicates a strength or no concerns, amber indicates some concerns, and red indicates significant concerns. This visual representation is designed to be more easily understood by parents. The information is transferred into an outcomes table that enables parents’ strengths, areas where support is required and areas of significant concern to be clearly represented.
A range of factors (other than learning disability) may impact on the capacity of individuals with a learning disability to parent effectively. These include:
- their own experiences of being parented
- their (lack of) opportunities to acquire parenting skills
- their living/ housing conditions
- the presence of health conditions (theirs or those of the children)
- their financial situation
- their support networks
- domestic violence
- drug and alcohol issues
Each of these needs to be considered since they (rather than the presence of a learning disability) may impact on the ability to parent. For example, a parent’s experience of being parented and/ or current domestic violence may lead them to feel that abusive behaviour is acceptable and thus limit their ability to safeguard their children. Support in relation to understanding personal and sexual relationships may thus be needed to support parenting capacity.
when you're looking at the issues of parents within (learning) disabilities, it's important for everybody to see that things like social isolation, poverty, domestic violence, those are indicators… you know child sexual exploitation. Those things are really important.
A third parenting assessment approach that is being more widely used in Wales is CUBAS. This assessment has been specifically designed for use by trained social workers and is describe as a dynamic parenting assessment that is all accessible for all parents including those with learning disabilities. A range of areas are assessed including parental health, understanding of children’s needs, parental attitudes, motivation and capacity for change, support networks and environmental considerations. Using specialist software it enables the creation of reports for use in court proceedings and also individual reports for parents. A library of tools to support intervention are available and it measures the ability of parents to benefit from additional training. The impact of interventions can also be assessed through reassessment which does not require repetition of the entire assessment process. To use this assessment approach social work practitioners must undertake the CUBAS training and to undertake this they must be three years post qualifying.
Given complex family needs it may also be that several professionals (for example midwives, health visitors, and speech and language therapists) are involved in assessing parents and/ or their children. Such assessments should be coordinated and (with consent and within protocols for sharing information) information shared to avoid both unnecessary repetition of assessment and omission of key areas.
Where: People with learning disabilities can find it difficult to transfer learning from one setting to another. Wherever possible, therefore, parents should be assessed in their home environment: a task they find easy in their own home may be difficult in an unfamiliar setting with equipment they are not used to and without familiar supports. Where this is not possible time should be taken to ensure familiarity with the different surroundings/ equipment and consideration given to enabling familiar supports (such as family) to be present if the individual feels this would be helpful.
you know if you've got somebody coming in and asking you a lot of questions, you're not going to be able to express yourself, perhaps as well as you might. But if it started as a conversation, they could, you know do their checkbox through a conversation rather than come in with a bit of paper in front of them scrawling and writing.
we just got to recognize that assessment will take time and with learning disabled parents we’re going to need more time because we need gaps in between the chunks of talking that you're going to be doing. And we need to be going back over things over and over so that you may check that they understand what you're saying, but also that they start to memorise what you’re doing and why. But it is a subtle difference in the style of that kind of assessment
How: Multiple assessments may be required (for example a cognitive assessment from a psychologist). In such circumstances it is important that processes are coordinated to ensure all areas are covered whilst avoiding duplication It must also be remembered that multiple assessments can be incredibly stressful for, and confusing to, parents and hence that they need to understand what is happening and why. In keeping with the Code of Practice (2015) a lead practitioner should therefore be identified, and the parent(s) should be aware of who is taking this role.
Good practice points:
- Take time to build a relationship with the family before starting the assessment process.
- Ensure that the assessor has the right knowledge and skills to undertake the assessment; this should include experience of working with adults with a learning disability.
- Consider developing an agreement/ground rules with parents as to how the assessment will be conducted; make sure the parents have a copy, that it is easily understood by them, and that it is regularly revisited.
- In keeping with the Social Services and Well-being (Wales) Act (2014) ensure that the starting point for assessment is to ask the parents ‘What matters for you?’
- Ensure that the assessment is based on the family’s existing strengths and supports.
Planning and delivering effective support
Assessment of family needs should form the basis for planning and delivering family support. This may involve minimal support, a care and support plan, or more extensive intervention and support planned and delivered within the framework of the Social Services and Well-being (Wales) Act (2014). At all times there should be full involvement of the parents and (where appropriate) the child / children, should build upon their strengths and existing supports, and in keeping with the social model of disability should be focused on removing disabling barriers.
It should also recognise the parents’ capacity to develop new knowledge and skills with the appropriate training and support whilst understanding additional time and repetition may be needed for such knowledge and skills to be acquired. It is also important to remember that parents with a learning disability may be reluctant to ask for or to accept help: it is important to take time to explain why support is being provided and what is to be achieved. Where outcomes need to be achieved within a specific period, it is important for parents to understand exactly what is required and within what timescale. This may mean that goals need to be broken down into smaller steps to support learning and achievement.
I just want to get them to start bringing in people to help parents with learning disabilities, I know it costs money, but money should not be considered. It should be like Flying Start, so the parents are helped and taught the skills they need before the child is born and (before) it even goes to court. Do it early on. The funds need to go on the right channels.
Then the midwife taught me when I came home to do bottles and feeding. I asked her to show me how to do things. She was there all day, and she taught me how to sterilise…I had all the support that I needed, but I think I needed that little bit of help.
The health visitor would come out and say right breast feed. Do this. Do that and then leave. You know tell you what to do, but not necessarily how to do it. We didn’t have a clue.
As previously noted, appropriate supports should be put in place in a timely manner to provide sufficient time for parents with a learning disability to learn any new knowledge and skills they require to parent effectively. It is also important to remember that early intervention can prevent situations from deteriorating and prevent problems from occurring.
In keeping with the Social Services and Well-being (Wales) Act (2014) the planning and delivery of care and support should be focused on the outcomes that need to be achieved. In some instances, these may be identified by the family. However, they may be outcomes that are required if the child / children are to remain with their birth family (for example outcomes required by courts). In all situations it is important that the parents understand what these outcomes are, how they are to be achieved, who is responsible for what, and what timescales are involved.
Yeah, (name of social worker) would always say this is what we've done so far. This is what we've covered...Always be clear about OK, let me understand what this what happened or what it is. So, when we go to meetings and other professionals sort of go in for the kill, as I would describe at times, it's like a bit like being ganged up on, (name of social worker) would always be there and to clarify.
Reasonable adjustments may be required to ensure that parents are able to understand, retain and use information contained in a support plan. Depending on the needs of the parents these might include things such as:
- ensuring the plan is produced in an easy read format which is then talked through with the parents to ensure understanding
- breaking down the plan into smaller sections that can be understood one part at a time
- providing an audio recording of the plan that the parent can listen to several times
- ensuring that an independent advocate is available to assist the parent with contributing to and understanding the plan
- ensuring that prompts / reminders are provided when specific timescales must be met – these might include (for example) text reminders and visual calendars
- providing reminders to assist with memory when key actions are required within the home setting. For example, rather than saying that a feed requires 200 mls of fluid provide a cup that measures the required amount and tell them to use that cup to measure.
- including photographs of key people in a plan to provide a helpful reminder of who does what.
It was really hard because obviously with my learning difficulties, and stuff like that (sister-in-law) was good as gold, she taught me a lot. She showed me how many bottles to make, and times to change the baby. I just got used to it then, motherhood kicked in…And then getting up then to go to nursery and stuff like that, 'cause obviously I cannot tell the time. I was struggling with what time to go, what time to take her and what time to pick her up. I really relied on my partner to take her and then I would go with her to pick her up.
When planning care and support it is important to build on existing strengths and supports such as family, friends, and the local community. Nonetheless, when incorporating this support into a plan it is important that those providing it are clear about the level of commitment they can give. They may feel they need to over commit, particularly when there is a risk of children being removed from the family. However, if they offer support but cannot provide this there is a risk that the parents will be left unsupported.
It may also be helpful to link the parents with existing community groups such as parenting classes and parent and toddler groups. However, it is important to be mindful of the barriers that parents with learning disabilities may face in such settings (for example information not being provided at a pace that is accessible to them). Reasonable adjustments may be required to ensure access, and this will require (with the parent’s permission) liaison with those running such groups to ensure they are aware of what may be required.
It may be helpful for parents to receive support from specialist learning disability services delivered by either the statutory or third sector. This may include the Adult Community Learning Disability Team which is present in each local authority. Practitioners within this team may provide direct support or act as a source of advice (for example an occupational therapist or community learning disability nurse may provide advice regarding how best to adapt the environment to support the parent, a speech and language therapist may provide advice regarding effective communication). In some areas specialist groups for parents with a learning disability may exist. These may be peer support groups and/ or services that provide ‘hands on’ support for parents as they learn new skills and provide a level of advocacy support. There is also a network of People First (self-advocacy) Groups throughout Wales who may be able to provide advice and support.
My wife is visual, maybe she could have been helped with a doll and then explain things to her about holding. The more she does, the more she learns. It's like now she's constantly on the go now so you know the house is important now to keep tidy so she's constantly doing stuff now, cos she's learned what she's doing.
we're talking about parents that probably haven't been adequately parented at all and coming into children services with very limited skills and abilities to be able to do those things. And the only way we know is to repeat, repeat, repeat, and we're on a 26 week timetable before proceedings have to end for that child
When supporting the development of parenting skills, it is important to identify what the parent can do independently, where they will require training to become independent, and where they will require direct support (possibly on a long-term basis). Some parents may require focused training and support to enable the development of parenting skills. This may take several forms including residing in a mother and baby unit, college-based courses, general parenting courses and one to one focused support. When planning and delivering such support it is helpful to apply some key principles:
- make sure that the parents understand why training is being provided and the desired outcomes
- wherever possible provide training in the family home since the parents may have difficulties in transferring learning from one setting to another; where this is not possible then support to transfer learning may be required (for example someone supporting and observing the parent at home until they feel confident and competent)
- training should be as ‘concrete’ as possible and provide parents with the opportunity to practice skills using the equipment they will be using at home
- when supporting development of skills such as decision making, and risk assessment, use scenarios and settings parents are likely to encounter and use visual clues they are familiar with (for example their family home and their local area); once mastered learning can then be generalised to other situations/settings
- remember that it is important to pace learning opportunities to ensure that parents are not overwhelmed
- remember that repetition and reinforcement may be required to assist parents to master skills
- remember to regularly check for understanding and encourage parents to ask questions
- avoid the use of jargon or (where this is not possible) make sure that an easily understandable explanation is given
- when training is being provided by different people and/ or in different settings make sure that consistent advice and support is provided
- where possible make adjustments so that skills may more easily be acquired; this might, for example, include providing visual reminders, breaking tasks down into smaller steps, provide audio recordings of prompts.
I think I think it has to be accepted from the outset that the support required may well be long term. But if you get in early and you can nip in the bud a crisis developing it might only be light touch required.
there's gotta be somebody looking in and asking the questions to the parents on a regular basis 'cause today might be great, tomorrow might be terrible, and it could just be a change of worker or something that they …haven't understood or it hasn't been explained to them.
As previously noted, the support that parents with a learning disability need may be long term and/ or will be needed at various times in the family life cycle as the needs of the parents or the child / children change. This may be at odds with the short term, outcomes focused approach to working with families. However, in keeping with the principle of early intervention then a mechanism for ensuring on-going support should be put in place since this may reduce the potential for future crises to occur or (where they do) prevent them from escalating. Where on-going support is not available from the local authority then consideration should be given to ensuring that either family, alternative statutory or third sector support is in place. For example, it may be helpful to have on-going support from a specialist peer support service for parents with learning disabilities where one exists.
‘in some cases those children should be removed. You know, it's not always the case of it doesn't matter how much support you put in place, that child’s needs may not be met, and so you know we have to say that as well. It's not always a case of it could be any different if you gave it more time, but I think it's the issue of you know… is whether we can improve those chances,’
It is important to remember that, even where support is provided, it will be necessary for some children to be removed from their family. In some instances, this will be due to difficulties in relation to development of the appropriate knowledge and skills to adequately parent their children. In other circumstances it may be due to other factors such as inadequate housing, health issues, substance misuse or domestic violence. Whatever the cause it is important to recognise the parent’s need for care and support following the removal of their child. They may experience a range of feelings including grief, loss, and anger and these will impact on their health and well-being. Support may be required either to maintain a level of contact with their child / children (where permitted) or to come to terms with losing contact.
Good practice points:
- Ensure independent advocacy is available for parents to support them to participate in the development of a plan and to assist with ensuring they understand that plan.
- Be aware of key contacts within the local Adult Community Learning Disability Team and use these contacts to ensure appropriate support.
- Be aware of specialist learning disability services including third sector provision such as People First groups.
- Adopt a strengths-based approach which builds upon the family’s existing strengths and support networks
- Ensure reasonable adjustments are in place to enable parents to understand the process of planning, what is required to achieve identified outcomes, and to access support services; this may require adjusting the means of communication, timescales, and providing prompts/reminders.
- Provide any training for parents in the family home; where this is not possible then support to transfer learning should be provided.
- Where it is necessary to remove a child/children from their family then the parents’ need for ongoing support should be recognised and met.
Support in court proceedings
There are three key stages when parents may require support in relation to court proceedings – preparation, during, and following proceedings.
when you go into a complicated court process and not even the social workers like understand half the time… so imagine the stress of thinking, oh, if I don't get this right, I'm gonna lose my child. They just don't say anything. You know you're offering me solicitor 10 minutes before you get these huge documents
As reflected in the quote above parents should be appropriately prepared for court proceedings and provided with accessible information in a timely manner. Being asked to understand new and complex information may be generally challenging for parents with learning disabilities, but the stressful context of a court presents additional barriers to understanding.
The parents should be advised to instruct a solicitor experienced in family law who is a member of the Law Society’s Children Panel. Ideally, the solicitor should also be experienced in representing parents with learning disabilities so that they understand parents’ specific needs in relation to communication and understanding.
The following may also be helpful:
- the support of an independent advocate who has an established relationship with the parents and experience of supporting people with a learning disability
- providing parents with information about the people and processes involved, and what their role will be during proceedings; such information should be provided in formats agreed with, and accessible to, the parents and at a pace that enables them to process and understand it; (see Appendix 2 for resources)
- any key terminology that is likely to be used during the proceedings should be explained to the parents; (see Appendix 2 for resources)
- where any documents are to be referred to in court then these should be carefully explained to the parents in advance, and they should be encouraged to ask questions
- consideration should be given to asking the parents if there is anything they would wish the court to hear regarding their views and wishes; if they do wish for their views to be heard, then support should be provided to enable them to prepare either a written or oral submission which can be passed to the solicitor
During the court process support should be available to provide both moral and communication support for the parents. This might take the form of explaining what is going on or interpreting any information that is unclear. An independent advocate has a vital role to play here. In addition, under the provisions of the Family Procedures Rules (2010) Part 3A) there is a duty to identify anyone who might be a ‘vulnerable’ witness and to put in place measures to assist them in giving evidence. The court may therefore appoint an intermediary for parents with a learning disability and adjust how procedures are carried out to support their participation.
the parents are normally sat, you know, closer to the back - the solicitors and barristers, they're always speaking forward to the judge. If a parent only got a slight hearing loss, they can't understand what's being said or going on… and you know some of the wording is lost. So, I spend my time whispering into their ear. And when we go in there's no introduction of who people are, or you know why they are there…there’s loads of people in the room, which is really confusing. But the parents’ voices never asked to be heard, so they're not given the opportunity to represent themselves
Following court proceedings parents may require support to understand what has occurred and what the implications are. Where the proceedings have resulted in a child/children being removed from the family home then it is important that parents are provided with emotional support to cope with this decision. It may be that the support being provided for the family was (up to court) being provided by children’s services and that once a child is removed from the family then support is also withdrawn. However, the parents will have their own needs and it is essential that these are recognised, and appropriate support mechanisms put in place.
Good practice points:
- Parents should receive support to prepare for court to understand what will happen.
- If the parents wish, they should receive support to develop a statement of their views and wishes that can be submitted to the court.
- During court proceedings moral and communication support may be required along with adjustments to proceedings.
- Following court parents may require support to understand the outcomes and their implications; where children are removed then they should also be reassured regarding their children’s welfare.
- An independent advocate who has an established relationship with the family and who has experience of supporting people with a learning disability can be vital in providing support throughout and following the court process.
Collaboration, coordination and continuity
Where a parent has a learning disability families may require support from a range of formal and informal sources. However, there is a danger that either there will be duplication (which can be confusing for parents) or that there will be significant gaps in provision. There is therefore a need for coordination and collaboration both within and between services. This is in keeping with the Social Services and Well-being (Wales) Act (2014).
Social Workers need people working with the community learning disability team a bit more, to get the full picture of which needs need to be put in to place. Cos at the moment, it is not working. Too many people are falling through the gaps, with no support.
I'm really down heartened when other professionals such as midwives, health visitors… we all bring to the table something, but we're not always heard at the appropriate times.
To facilitate a coordinated and collaborative approach a joint protocol for identification, referral, assessment, and support of families where a parent has a learning disability is needed (expanded upon in Section 10). See 'Working Together with Parents Good Practice Guidelines'. However, at the practitioner level measures can be taken to promote effective collaboration and coordination. For example, those working in children’s services can ensure that they are aware of colleagues working in the Adult Community Learning Disability Team and local services (including third sector) available to provide support. The limits to personal/professional competence should be recognised and the knowledge and skills of others valued, so that they can be used to provide the most effective support for families.
I think we forget that assessments can be multidisciplinary, and they can come from lots of different people and lots of different viewpoints. And I think there's a place there for it to be done jointly… because it's a lot of responsibility as well, you know, as a professional, to be doing those assessments … And I think shared responsibility, shared discussion and learning between childcare social workers and adult social workers is the way that we can improve things because we're sharing knowledge then through assessment, and through individual cases that we're talking about. And that's the way we're going to learn, you know.
I think it's just people, you know, having the right amount to pull from the right services to bring together… you know, clear process and support for an individual. You're not diluting the roles, anybody's role, or whatever job they're doing. You’re…bringing it together so it's really, really supportive.
Another key issue for parents with a learning disability is the consistency of the support they receive.
The problem is I need the same person, keep changing social workers, I had too many to count, I can’t keep up I feel so frustrated, it’s so overwhelming. There is a high turnover, and your case gets passed on to others all the time, I can’t cope with that.
The social worker left, the one we have now is lovely (name). She is really supportive of the family, but we have got a new social worker coming in so that all the children’s anxiety is gone through the roof again. The social workers keep changing, it does our heads in.
Whilst staff turnover may make it difficult / impossible to ensure consistency and continuity of social work support it is important to acknowledge the impact that this has on parents with a learning disability and try to reduce this. Maintaining good communication with the parents and ensuring transparency are vital. Where there must be a change in social worker this should be communicated carefully to parents. They should be provided with the contact details of new staff and, if they are yet to take up post, they should be given an interim point of contact. Where possible there should be a handover between workers and where this is not possible then clear records of how best to provide support for the family should be provided to avoid parents having to repeat information unnecessarily.
Good practice points:
- A clear and coordinated approach to care and support is required for families where a parent has a learning disability to ensure they can access the most appropriate knowledge, skills, and support.
- Coordination needs to occur both within the local authority and between agencies (both statutory and third sector).
- The impact of staff changes on parents needs to be acknowledged and where possible minimised.
Whilst this guidance is primarily aimed at social work practitioners, best practice at practitioner level needs to be facilitated by appropriate organisational supports. Previous research in Wales identified the need for effective protocols for joint working between child and adult social care services. Such protocols provide practitioners with a framework to work within that identifies what needs to happen, when, and whose responsibility it is. They identify where joint working is required, when referrals need to be made, and where advice can be obtained.
Such a protocol should also encompass an agreed pathway for inter-agency working to clarify responsibilities of the various statutory and third sector agencies and professionals working within them (such as midwives and health visitors), along with mechanisms for coordinating support for families. It should include identification of budgetary responsibilities, how independent advocacy will be provided, and who will fund this.
Ideally there would be a common protocol across Wales to promote greater equity and consistency of provision. However, this may be difficult to achieve given that services and structures vary in different localities. A shared protocol may, nonetheless, be possible at the level of each Regional Partnership Board where the various agencies have a duty to work in a collaborative manner.
To further enhance the capacity of social work practitioners to support families where parents have a learning disability it is essential they have access to appropriate training and on-going support. This should include a focus on identifying where a learning disability may be present, effective communication, and how to make reasonable adjustments to processes and supports to promote participation, voice, and control. Such training might be provided by third sector organisations particularly those actively engaged in providing practical advice and support to people with learning disabilities and could usefully be delivered by parents with learning disabilities.
I think people just genuinely don't have the necessary knowledge and skills to work effectively with them because they haven't been given that. And you know, I still feel like what we tend to learn, and I'm probably the expert in accordance to my local authority because I'm the one doing the PAMS assessments, but you know you still feel like well, I'm learning as I go and I think it's a huge gap. You know we just we just expected to know and you know we don't.
It is particularly important to ensure that practitioners undertaking assessments of parenting capacity receive the appropriate training for the assessment tools used, have experience of working with adults with a learning disability, and are trained to use and interpret the assessment tools.
As a further source of support for practitioners, local authorities could also usefully consider provision of the following:
- the identification of a post within children’s services where the post holder acts as a specialist resource for colleagues in relation to supporting families where a parent has a learning disability; this might take the form of a ‘learning disability champion’
- the provision of a resource within children’s team that includes contact details for the local Adult Community Learning Disability Team and other services such as People First Groups; this would need to be regularly updated to ensure accuracy
- the provision of easy read templates for key communications (such as appointment letters and care and support plans) that practitioners could use and adapt according to the needs of individual parents; (see Appendix 2 for some resources)
Good practice points:
- A clear and coordinated protocol for joint working to identify and support parents with a learning disability should be in place in each local authority; this should include identification of how independent advocacy will be provided and where financial responsibility for the provision of care and support lies.
- Social work practitioners should be provided with education and training in relation to supporting parents with a learning disability; this should include communication skills and the importance of making reasonable adjustments.
- Assessment of parenting capacity should be undertaken by practitioners who have experience of working with adults with a learning disability and who are appropriately trained to use the assessment tool.
- Local authorities should ensure that resources such as a learning disability lead/champion and information regarding local learning disability services are easily accessible to practitioners in children’s services.
Appendix 1: relevant legislation and policy underpinning this guidance
The Human Rights Act (1998) - many of the rights outlined in this Act may be relevant but particularly the right to respect for private and family life. In addition, the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities are also of relevance.
The Equality Act (2010) - disability is one of the protected characteristics under the Act and statutory services have an anticipatory duty to make reasonable adjustments to the way in which goods and services are provided to promote equality of access. This means that the manner in which information is provided and services are delivered may need to be adjusted to meet the needs of parents with a learning disability.
The Social Services and Well-being (Wales) Act 2014 – this (along with the codes of practice) sets out responsibilities in relation to the assessment of need, the provision of support, safeguarding of adults and children and the provision of advocacy. Reference is made throughout this guidance to this framework.
The Well-being of Future Generations (Wales) Act 2015.
The Children Acts (1989 and 2004) - place a duty on professionals to work collaboratively across public services to support children and their families.
The Mental Capacity Act (2015) - provides a framework within which to assess the capacity of individuals to make decisions. Assessment focuses on the ability to understand, retain, weigh, and use information to decide. It recognises that capacity can be fluctuating, and that capacity is decision specific – an individual may have capacity to make one decision but not another. Where an individual has capacity then their decision must be respected even if it is deemed by others to be unwise. Where, however, the individual lacks capacity to make a specific decision then a best interests decision may be needed.
In addition, there are key policies that have relevance:
- Improving Outcomes for Children
- Improving Lives
- All Wales Safeguarding Procedures
- National Occupational Standards and the Code of Professional Practice
Appendix 2: further resources
Developing accessible information
Photo Symbols (a picture bank that can be used to support development of easy read materials – subscription required)
Plain Language Commission Guides on Writing Clearly
Information for parents with a learning disability
CHANGE – produce a range of easy read materials to support parenting, personal and sexual relationships, and sexual abuse. (Please note there is a charge for these materials).
Learning Disability Wales – website has links to a range of accessible information for parents with learning disabilities.
Working Together With Parents – website contains links to a range of accessible information for parents with learning disabilities