Parents with a learning disability in contact with social care and the courts: Falling between the two stools of social care

Abstract

Summary

The number of parents with a learning disability (LD) is not known and there are poor data available on the number in contact with adult or children's social care services in England. Policy initiatives on LD that emerged in the early years of this century have failed to be implemented as envisaged. Over 330 professionals across social care, health, law, and other sectors Contributed to interviews and case studies.

Findings

Across social care there is very low awareness of guidance produced to support practice with parents with an LD, although it has been cited in cases in the family court. In part the deficits identified in this study reflect the failure of services to adopt a holistic approach to families because of pressures to meet immediate priorities. But in the meantime parents with learning disabilities are not receiving an appropriate response and their children may be being removed unnecessarily.

Applications

The study highlights the need for three elements to be addressed if the position of parents who come in contact with children's services and family courts is to be improved. These are the importance of better data on the group, commitment from government to the provision and implementation of contemporary guidance and improved collaboration between adult and children's services.

Introduction

The term “Learning Disability” (LD) is widely used and understood in the countries of the United Kingdom, although this article draws on data collected in just England. Other terms used internationally include “intellectual disability” and “developmental disability” (Scior & Werner, 2015). A “learning disability” is defined by the NHS as affecting “the way a person learns new things throughout their and stresses that an LD is different for everyone life” (National Health Service, 2025). The term has been used in Government policy (e.g., Department of Health, 2001) and professional guidance (HM Government, 2023). One of the problems which occurs in the literature—and sometimes in practice—is the failure to distinguish between learning difficulties and LDs (Kohli et al., 2018). A learning difficulty does not affect a person's general intellect. People with either may be on a spectrum from mild to severe but, with few exceptions, adults with a learning difficulty would not qualify for a service from adult social care (ASC).

The World Health Organisation's (2018) International statistical classification of diseases and related health problems (ICD-10) defines four degrees of LD: according to the Full Stage Intelligence Quotient (FSIQ)—mild (an FSIQ of 50–69), moderate (an FSIQ of 35–49), severe (an FSIQ of 20–34), and profound (an FISQ of less than 20). These categories have been criticized on the grounds that they omit any measure of social or adaptive functioning (see Koriakin et al., 2013). While having an FSIQ of below 70 is often used as a strong indicator of a person having an LD it is only considered as a measure alongside other social factors when considering eligibility for specialist support.

The courts have highlighted the importance of having guidance on working with parents with an LD and they have also challenged society's negative assumption of the ability of parents with an LD to parent their children. From the statement from Mr. Justice Hedley in Re L (Care: Threshold Criteria) [2006] on the need for society to “be willing to tolerate very diverse standards of parenting, including the eccentric, the barely adequate and the inconsistent” to that of the President of the Family Division, Sir James Munby, in Re D (A Child) (No 3) [2016] that parents require “reasonable adjustment … for the deficits in their parenting which arise from their own inherent difficulties rather than from neglect or failure or indifference” it is often the law that had shone the light on the inequitable treatment of parents with an LD.

Parents with LDs

An estimated 1.3 million people have an LD in England, including over 950,000 people aged 18 or over (Public Health England, 2023). Those who become parents are likely to face a disproportionate level of social disadvantage and challenges over parenting. They are more likely to experience—or have experienced—domestic abuse, childhood trauma, poverty, and homelessness and these factors may lead to concerns about the care they are able to provide for their children (Stewart & MacIntyre, 2017). Many will have histories of disadvantaged childhoods with repeated experiences of failure, discrimination, abuse, and low self-esteem (Cotson et al., 2001). Their children are also more likely to come to the attention of children services over concerns that they may be or are at risk of significant harm from their parents (Aunos & Pacheco, 2021). The parents, in turn, are disproportionately represented in family courts where their adequacy to parent is decided and more likely than other parents to have children removed from their care (Wilson et al., 2014).

The incidence of parental LD is reported very poorly on social care case recording systems (Burch et al., 2019). Estimates of the number of parents with an LD in England, such as that of Emerson et al. (2005), are now dated and there are no reliable data to replace them. Hood et al. (2023) examined data on social work assessments conducted over a 7-year period in England between 2014 and 2021. They acknowledged that the recoding of relevant factors in the Children in Need (CIN) census—an administrative dataset on children referred to social care services in England—has improved since it was introduced in 2014 but questions about its reliability remain. Bearing this reservation in mind in three per cent of assessments a parental LD was noted.

Policy context

The Valuing People strategy (Department of Health, 2001) set out the Government's commitment to improving the life chances of people with an LD. It gave a specific commitment to improving services for parents with an LD, while recognizing the conflict in the then nominally generic local authority social services departments “between those whose focus is the welfare of the child and those concerned with the parent” (p. 81). It referred to the report by the Social Services Inspectorate (Goodinge, 2000) that found services for parents with LD “patchy and underdeveloped” and that the eligibility criteria for receiving services failed to take account of parenting responsibilities. It also found that staff working with parents with an LD often lacked the necessary skills and, in too many instances, decisions to remove children from their care relied on inadequate information. A summary report on the progress of the strategy (Department of Health, 2010) noted several good practice examples, but nothing to indicate how the strategy's laudable intentions had been taken forward at a national level. It acknowledged that adults’ and children's services needed to work together “more effectively” to identify and respond to the needs of parents with an LD so they received the right support at an earlier stage. Citing Think Family: Improving the life chances of families at risk initiative (Cabinet Office, 2008), it highlighted the need for a vision of the whole family, with better integration of adult and children's services.

A few years earlier the Children Act 2004 had transferred responsibility of social care for children and young people from the Department of Health (DH) to the Department for Education and Skills (DfES), with the DH retaining responsibility for adult services. The tensions in unified social service departments that had been evident for many years (see Jones, 2020) were unlikely to be lessened when they became two separate entities with different priorities. In 2007 the DfES became the Department for Children, Schools and Families, the driver being Every Child Matters policy, introduced in 2003 with an emphasis on improvement of universal services for children and young people. Purcell (2020) noted that the separation of children's and adult services effectively dismantled the co-ordinating role devolved to social services under the Children Act 1989. Jones (2020), however, has argued that this had already happened years previously. In his opinion not only had the Children Act 1989 led to increasing specialism within services for children, the National Health Services and Community Care Act 1990 created a purchaser–provider separation within social services departments and pulled adult and children's services in different directions.

Into this mix came the Good Practice Guidance on Working with Parents with a Learning Disability (DoH and DfES, 2007). It was written by Jenny Morris, a disability activist and academic with the Working Together with Parents Network (WTPN) in collaboration with the DH's Valuing People Support team. It was intended for both adult and children's services, as well as agencies across both statutory and independent sectors. It was updated by the WTPN in 2018 and 2021 under government license to take account of statutory and nonstatutory changes but failed to reflect some of the most significant developments impacting on children's social care (CSC).

Unlike other guidance applicable to services working with children and their families, such as the various iterations of Working Together to Safeguard Children (latest version is HM Government, 2023), the Good Practice Guidance is not statutory. Notwithstanding it has, taken on a specific significance in the Family Justice arena. In 2011 The Honorable Mr. Justice Baker in Kent CC v A Mother [2011] EWHC 402 (Fam) said that despite the Guidance containing important advice, social workers appeared to be unfamiliar with it. He commented that, alongside family support workers, they needed to be trained to recognize and deal with parents with LDs and that the Guidance needed to be followed. It was endorsed in 2018, by the (then) President of the Family Division, Sir James Munby and again in 2023, by his successor, Sir Andrew McFarlane. Its principles have been commended in a number of family court judgments where it has been used to castigate local authorities for not using it. Recent examples include those by Mrs. Justice Knowles in XX, YY, and Child H (Rev1) [2022] 19 and by the Court of Appeal in H (Parents with Learning Difficulties: Risk of Harm) [2023]. Despite the support from the judiciary, it remains the case that the Guidance was not promoted by the two government departments that sponsored it both of which have long been known by different names.

The final piece in this jigsaw is the Care Act 2014. This Act combined different pieces of legislation and was described as the most significant reform of care and support for more than 60 years (see People First, 2022). It was intended to reform the way care and support was provided for an adult with care needs, but it also places a duty on local authority (LA)s to coordinate support in such a way that it takes account of the wider circle around the adult, including any children. Section 13 of the Act provides that an individual's needs must arise from, or be related to, a physical or mental impairment or illness, and as a result they must be unable to achieve two or more of the specified outcomes and as a consequence there is, or is likely to be, a significant impact on the individual's well-being. One of these outcomes is to carry out caring responsibilities for a child. While social workers in CSC have responsibility under the Children Act 1989 for facilitating access to a wide range of services to support vulnerable children and families, the responsibility for assessing the needs of children thought to be in need is dominant. This is at a time when both services are operating and prioritizing under extreme pressure (Association of Directors of Children's Services [ADCS] 2022 and 2025).

The study

The data reported here are drawn from a study that started off exploring the role of LA ASC services for parents with an LD when a child is no longer in their care. Early on in the work and with the approval of funders, it became clear that it would be more useful to extend the study to look at the support available to parents with an LD during and after proceedings, and even the run up to that point. It is one of the largest study on parents with an LD that has been conducted in England and is distinct in having included the perspectives of adult and CSC. To understand what the role of ASC might be required an understanding of how parents came to be known to ASC and CSC, as well as their interactions with other agencies and professions. The 18 month study was conducted during 2022–2023 in three distinct phases. During Phase 1 research evidence was reviewed and the views of 83 experts on LD across social care, health, law and advocacy were elicited (Table 1). These experts were recruited by approaching authors of articles on parents with an LD that had appeared in a range of professional journals, as well as acting on recommendations from colleagues and subsequently also from those who were interviewed. These interviews were sufficiently flexible to explore their specific experiences, their understanding of the wider multiagency and legal context and reflections on the subject more widely.

Table 1.

Phase 1 interviews with key informants (n = 83).

Agency/service	N	Agency/service	N
Advocacy and similar	5	Services for parents	10
Children's social care practitioners	6	Adult social care practitioners	7
Assessment team/service	5	Health LD team	3
Transitions team	3	Perinatal mental health team	3
Drug and alcohol service	2	Midwifery team	2
Judge	3	Psychiatrist	2
Solicitor	6	Clinical psychologist	2
Barrister	5	Academic	7
Psychiatrist	2	LD expert (other)	4
Clinical psychologist	2
Cafcass	4

Note. LD = learning disability.

Phase 2 consisted of interviews with senior staff in 24 local authorities with responsibility for people with an LD (Table 2). These LAs were in a randomly, but geographically stratified, sample drawn from the 151 LAs in England. In a minority of instances key contacts in ASC brought along colleagues from CSC and health services. A total of 73 individuals were involved in this phase of the project. The interviews were more structured than those conducted in Phase 1 to allow consistency in the information collected, but they were also sufficiently flexibility to take account of each LA's different staffing and service arrangements.

Table 2.

Phase 2 interviews in 24 local authority adult social care departments (n = 73*).

Region of England	Adults social care in:	N seen
London	4 London boroughs	11
East	1 unitary authority and 2 county council	7
East Midlands	1 unitary authority and I county council	7
North East	1 metropolitan area and I county council	7
North West	2 unitary authorities	8
South East	1 unitary and 3 county councils	12
South West	2 unitary authorities and 1 county council	8
West Midlands	1 metropolitan area and 1 unitary	6
Yorkshire and Humberside	1 metropolitan area and 1 county council	7

Note. ASC = adult social care; CSC = children's social care.

*59 individuals from ASC, 10 from CSC, and four from Health.

In Phase 3 eight case studies were purposively sampled from the 24 LAs participating in Phase 2 to explore specific areas that had been mentioned, such as a service configuration, an approach to accepting referrals or a multiagency initiative. These case studies involved staff from ASC, CSC, and other agencies in the same LA (Table 3). While prior contact made it relatively easy to engage ASC departments, it was far more difficult to engage CSC where there had been little or no previous involvement. In these instances those in ASC were not able to advise who would be the best contact in CSC so it took investigation and “cold” approaches to reach the most appropriate person to steer the project through to approval. In total 178 individuals were seen in this phase, 132 in interviews and 46 in six focus groups. Most of those seen worked in ASC and CSC but judges in local Family Courts, lawyers who had represented parents in these LAs and Cafcass Guardians were also seen. The interview and focus group guides were semistructured to allow specific subjects to be covered consistently while recognizing the responsibilities attached to specific roles. The interviews were undertaken by the author, an experienced social work and social policy researcher.

Table 3.

Phase 3 interviews and focus groups in eight case study areas (n = 178*).

Practitioner	LA1 County council	LA2 County council	LA3 London borough	LA4 Metropolitan area	LA5 County council	LA6 Unitary	LA7 Metropolitan area	LA8 London borough	N
ASC	4	6	14	6	4	5	5	6	50
CSC	7	4	16	4	8	7	14	4	64
Health	2	2	-	2	1	1	2	2	12
Cafcass	-	5	2	-	-	3	1	-	11
Judge	1	1	-	-	1	-	-	-	3
FJB**	1	1	-	-	1	1	-	-	4
Solicitor	2	2	-	2	-	1	-	2	9
Barrister	1	-	1	1	-	-	-	-	3
Advocate	5	2	-	1	-	-	1	-	9
Other	2	-	2	4	3	1	-	1	13
Total	25	23	35	20	18	19	23	15	178

Note. ASC = adult social care; CSC = children's social care.

*Across 132 interviews and six focus groups.

**Family Justice Boards.

All interviews and focus groups across the three phases took place online using Teams or Zoom video conferencing and were digitally recorded with participants’ permission and then transcribed.

Parents with an LD who were part of the Elfrida Society's parents’ group were involved in developing the interview and focus group guides at Phase 3, as well as commenting on the analytical framework and drafts of the report. The project was supported by an advisory group consisting of experts in the area from practice and academia, as well as groups representing parents with LD. The study also had an international reference group whose members were consulted individually as time differences made it difficult to draw them together for a meeting.

The present article concentrates on systems and local practices that shape how services interact with parents with an LD. It draws primarily on the views of professionals collected during the case study phase, but it is informed by data collected in the other two phases as well as relevant documents collected from the case study sites. A small number of interviews with parents were conducted that will be reported elsewhere.

Analysis of the data from each stage took place sequentially so the findings could inform the next stage. The transcripts from the scoping phase were read to refamiliarize the researcher with their content as recommended by Sandelowski (1995). This allowed the researcher to gain a sense of the overall content and identify potential areas of interest. The process then moved on to identifying elements that would form the basis of themes. The text was then coded using the themes, sometimes meaning elements of the text being coded against more than one theme. An analytical framework emerged that contained main and subsidiary themes. This framework was applied in both subsequent phases of the research where, as expected, additional themes were identified and the framework revisited and amended, and other rounds of coding undertaken. Finally related codes were grouped to identify the broader topics that emerged across the data set. A data management and analysis tool was not used but in hindsight it may have supported what was a time consuming process. All the case study sites were asked to provide the researcher with any protocol or practice guidance relating to working with parents with an LD but these were only provided by a few sites and so analysis was limited to noting their origin and contents.

Findings

This section reports the main finding emerging from the case studies.

Awareness

Only two protocols relating to parents with LD were provided (LA3 and LA8). In LA8 an Integrated LD (ILD) service and CSC had established a joint working party that developed a protocol intended to identify those parents that might benefit from services provided by the LD service. This protocol had been absorbed into the referral process and dictated the way in which the ILD worked alongside CSC. In LA3, while the protocol was mentioned in interviews with professionals in ASC, there was little or no awareness of it across CSC. A senior manager in CSC reported that a lack of capacity and heavy workloads stopped the guideline contained in the protocol from being put into practice. These two LAs stood out from the other six in that many of the social workers in ASC were aware of the Good Practice Guidance, although not those in CSC. In the other case study areas very few social workers in either ASC or CSC had even heard of it. Neither were there any reports of LA legal teams drawing these to the attention of their colleagues in ASC or CSC. Similarly only a small number of the lawyers in private practice interviewed during Phase 3 were aware of the Guidance and they were also unaware of cases in the Family Division where it had been cited.

Occasionally in interviews with CSC social workers discussions would shift backward and forward between parents with a learning difficulty and those with an LD, without recognizing that the two groups were different and would likely have very different access to services from ASC. Very few of the social workers interviewed had worked with parents whose LDs were so severe as to have been deemed to lack decision-making capacity to take part in court proceedings. But, with hindsight, practitioners in CSC believed that an early cognitive functioning assessment could have informed the way in which parenting and other social work assessments had been conducted and, in some cases, might have avoided challenges in proceedings leading to subsequent delays. However, apart from in LA8 which had an ILD team, referrals for early cognitive assessments were not usually accepted by ASC or LD services, although there were a few instances reported where parents had objected to the referral, which, because they were not in a statutory process, was their right to do so.

The two worlds of adult and children’s services

It became clear that very often those working in ASC and CSC did not have a good understanding of each other. One comment repeated across the services was that they “spoke different languages” and were driven “by different legislation.” Many CSC social workers did not understand the scope of the Care Act 2014 and those in ACS failed to grasp the impact of the significance of the paramountcy of a child's welfare arising from the Children Act 1989 and the centrality of the statutory guidance in Working Together to Safeguard Children:

We do not know enough about children's legislation and children's don't know enough about adults. The Care Act and the Mental Capacity Act are adult services’ bread and butter but those working in children's services rarely understand them. (Social worker, ASC, LA4)

I have spoken to services a couple of times, but I don't really fully understand what adult social workers do. In my mind, I suppose, I think of them as being more support for elderly people or people with really chronic mental health difficulties that impact their ability to keep themselves safe. (Social worker, CSC, LA1)

Some respondents reported that did not even know how to contact one another. One manager in LA4 admitted to not knowing how to contact ASC in the same authority:

… if you said to me how would you get hold of adult's services, I'd have to Google on the (LA4) website. I don't know an adults’ social worker, I don't know if they have a duty system, I don't know if they've got their own individual website; there is no guidance. Do they even have a learning disability service?

Some in ASC were also particularly critical of what they perceived to be the failure of CSC social workers to understand what capacity meant within the Mental Capacity Act 2005 and argued that every adult, whatever their disability, had the right to make their own decisions wherever possible, and be provided with the support to do so. They believed that too many of those in CSC assumed if someone had an LD they were not able to make any decisions:

A lot of the time it feels that children's practitioners feel they should dictate how things need to happen. It is important to fight potential bad practice and understand that if people have a learning disability, they probably have capacity and capacity is something very specific. (Clinical psychologist, LA8)

The Children Act 1989 and the Care Act 2014 were viewed as resting on two different and potentially conflicting philosophies, with the former being viewed as prescriptive and the Care Act as being more open to interpretation. This was at the heart of situations encountered in different forms across the case studies, often aggravated by poor channels of communication and uncertainties about responsibilities. A typical scenario cited was when CSC was working with a parent who appeared to be struggling and an LD was suspected. When a referral was made to ASC they experienced a slow response but may eventually be asked “have you used the right communication? have you referred for advocacy? have you considered how best to engage?” ASC in response felt that CSC failed to acknowledge the demands under which they were operating and pointed out that referrals were often incomplete which limited their ability to respond. They felt that the information in referrals implied that CSC was not always clear as to what ASC could do:

…sometimes it feels a bit like a tick box, that they are just making sure that we know about this person, rather than it actually being a meaningful engagement with this person consenting to our involvement, and that there are clear expectations on the outcomes that we could be supporting this person to meet under the Care Act. Without this it will usually be an inappropriate referral. (SW, ASC, LA3)

But without a positive response from ASC social workers in CSC admitted to giving up trying to engage:

It seems impossible to meet their thresholds, so you stop making those referrals, it's just like there's no point, and then you try and absorb those needs within the work that you're doing. (Senior CSC SW, LA2)

A manager in the ILD team in LA8 offered an alternative perspective. In their opinion while ASC was used to working with an element of positive risk-taking and was supported to do so by the Care Act 2014, the risks held by social workers in CSC were “of a different order.” They had to hold the risk of keeping children safe, acknowledging that children are not able to make—or often contribute to—decisions. This difference in remit was clearly illustrated in this example:

One mother was living in a supported living project, she already had a son … and then she had another child, and children and families (CSC) became involved … she just couldn't manage the two children. I had quite a difficult relationship with the social worker from children and families, he saw me as being obstructive and I saw myself as trying to advocate. It's really hard because from their perspective when they see children aren't thriving they need to act on that, but I need to advocate for the mother. I want them (CSC) to understand the importance of slowing things down, but I guess that's not necessarily in the interest of the children, so it becomes quite a tense relationship. (Social worker, ASC, LA6)

Services working together—or not

In some case study LAs, the LD teams that had previously been a specialist resource in ASC had been disbanded and their social workers placed in locality teams with a generic caseload. Over time many of these social workers had either left their posts or been promoted, but they were not replaced by those with specialist LD experience. Some social workers in CSC spoke of how they had been able to seek advice, even informally, from these teams and, alongside those in ASC, regretted the loss of that expertise. High staff turnover was another impediment to work across ASC and CSC, leading to working relationships being disrupted and more strategic and operational level changes not well communicated. In LA2 a tool to assess parenting capacity had been jointly developed by ASC and CSC in 2017. Social workers from ASC, some of whom had an LD specialism, mentioned how useful this had been but were unsure why they were no longer being asked to cowork with CSC. No one interviewed in CSC was aware of the tool, let alone used it. In the intervening years CSC had gone from being judged as “good” to being “inadequate” with high vacancy (25%) and turnover (20+%) levels of social workers, undoubtedly contributing to a lack of organizational memory.

ASC and CSC in all the case study sites were under pressure, with thresholds, priorities and waiting lists for services. One judge covering LA6 commented on a case taking place the day of the interview where she said it was obvious to her that a mother needed help and support:

… but she seems to have fallen through the net because the learning disability service don't think she's bad enough to warrant their intervention and support, the local authority adults’ disabilities team don't think she's bad enough for them either—this happens frequently. The focus obviously for children's services must be on the children, but the parents often need help and there aren't the resources there to provide it.

Some social workers in ASC admitted that a referral may not be prioritized if CSC is involved. Providing advice or offering to covisit may not be viewed as viable amidst other pressures, but then families did not benefit from wider experience and expertise. One case in LA5 involved a Traveler family where the parents were in preproceedings, the stage when children's services consider whether they need to apply to the Family Court to start care proceedings. The CSC social worker approached ASC because both parents were thought to be very vulnerable and would benefit from having their own interventions. They were told that because CSC was involved ASC did not need to be:

…and it just didn't make sense to me because we're here for that child but we should be viewing the family holistically. We can't give those parents what they need because our main focus has to be the child. (CSC SW LA5)

Others also suggested that as far as child protection was concerned some of those working in ASC would assume that CSC was biased towards removing a child and there was little point getting involved:

Some colleagues are totally cowed by the children's services, who they say will trump them because of the child protection card. I keep saying ‘we all have responsibility for child protection, not just social workers in children's services’ (SW, ASC, LA5)

There were examples where the commitment to support parents with an LD often depended on the interest and tenacity of individuals. Social workers in CSC in LA5 recognized they were not experts in working with people with an LD and often struggled to do so without support. On the occasions when support had been available, it made them realize how different the outcomes could be for families:

In one case we were heavily reliant on adult social care to say to us, right, okay, what could this look like, what might this need, what is the best way we can do this, what are we going to do here, how can we get the best out of this? The working relationships were close and I think then we got the best for the mother. She now spends time unsupervised with her baby and is going to have the best relationship she can have with her. (SW, CSC, LA5)

If ASC was working with a parent prior to them having a child/ren the pathway was usually different, but not necessarily consistent. There were cases where ASC support had been withdrawn when CSC became involved. One mother in LA3 had both physical disabilities and an LD and was unable to pick up her baby, so was cosleeping because it was easier than having to take the baby in and out of a cot. Before the birth she had a personal assistant (PA)—a directly employed care worker—funded by ASC, but as soon as she brought the baby home the funding for the PA was withdrawn apparently on the basis that CSC was involved. The CSC social worker concluded that this was to save money even though it might damage the mother's ability to cope and lead to a much greater call on public finances if the child was removed. Similarly in LA6 a young mother was living in a semi-independent flat where services arranged by ASC visited three times a day to assist her with daily living. When she became pregnant NHS professionals and CSC were both concerned about her ability to care for a child. When the child was born ASC withdrew and CSC was expected to provide a package of support. The services she had received were provided by staff trained to support an adult with their care needs, not to support parenting. The services provide by CSC were in relation to the best interests of the child but not necessarily those of the mother. An Initial Child Protection Conference was called to decide if the child might be at risk of significant harm. ASC was invited but did not attend and the child became the subject of a child protection plan and within months proceedings had been initiated leading to the child's removal. While the facts of the cases differ, it is still worth contrasting this with the approach taken to one family in LA1. Here a mother who was also receiving support from ASC, prior to and throughout pregnancy, was supported by her support workers after she gave birth, and they continued to support her parenting. At the time of the interview with the CSC social worker this child was six, and still in the mother's care. However while the social worker in CSC reflected on the positive aspects, she acknowledged that it was not the norm:

We had child protection concerns but the tenacity of her social worker in adults won through. She received support with the practical running of a house, making sure that it's a clean environment and that she understood when her appointments were, what the appointments were for. She was eligible for free nursery hours earlier than other parents might be, and then when the child was at nursery, she was encouraged to go and do things that were positive for her. This is the one success story that I've got whereas all the other cases haven't had the support and children have been removed. (CSC, SW, LA1)

In this case, social workers from ASC and CSC had worked together and the support had proved sufficient to sustain the family situation. The family had also been willing to pay the required financial contribution for ASC support, which not all parents were willing or able to do.

As noted above parents have the right to refuse a referral to ASC which may have consequences into the future. A CSC social worker in LA4 inherited a case from a colleague who had left. It involved a mother with an LD who was going through court proceedings. She had not consented to an earlier referral to ASC, but subsequently changed her mind and a referral was made as the case went into proceedings. It was not accepted as ASC reportedly said it was too late in the day to do anything. The CSC social worker expressed her surprise that even though the mother was found to have an IQ of 58 she was not assessed as requiring support. She had been told that as the mother had managed for over 30 years she had shown she could manage, although CSC argued unsuccessfully that she had not managed as a parent:

…there have been times when she's not done particularly well, she'd been in debt, her housing conditions had not been good, but she's in a better place now and I think, unfortunately, there is an element of, well, she can do it, which rather frustrates our efforts. The reality is that in this authority parents with a learning disability who are functioning day-to-day will rarely receive support from adult services. (CSC, SW, LA4)

Despite the fact that the mother had declined the first referral and ASC had then rejected the second one, this social worker noted that in court CSC was criticized for not being tenacious enough in securing support:

It was said that we should have insisted that the mum engaged with these services, but it does not work like that … in adult services it's voluntary, so if she's not voluntarily wanting to engage, they won't take her on, so we're in a real Catch 22 with that one.

This social worker criticized the court for assuming that “tenacity” had to come from CSC in engaging ASC rather than an expectation that ASC would engage. She was determined to push harder with ASC in the future to encourage them to be more creative in the way they approached their engagement with parents, including pointing them toward the benefits and wider support that they could potentially offer.

Nevertheless, where a parent's LD emerged during proceedings through assessments, conducted by experts, many in CSC thought ASC would not consider a referral. But there were exceptions. In LA6 ASC had engaged and supported a parent during the final court hearing. The children were adopted and ASC social worker was present when the mother met the adopters. This had left the CSC social worker wondering if the outcome would have been different if the support had been provided earlier. It had led to efforts to improve communication between ASC and CSC over parents with an LD in the hope that this would lead to improvements in how they worked together. So when someone from CSC said “we think this person's got a learning disability and can you help” there were indications that ASC were responding more positively:

I think there's been a lot more awareness and, as a result, improved practice. We were so disjointed previously. Parents could be in care proceedings before the possibility of a learning disability was raised because sometimes it had been blocked by a nonresponse at an earlier stage. And that makes me concerned about how many unnecessary removals we have sanctioned. (SW, CSC, LA6)

Discussion

There were three areas where there were significant deficits in practice, all of which make parents with an LD more vulnerable than they already are. The three are the paucity of data on this group, the absence of a commitment from government departments, singularly or in a joined up way, and the practice divide between adult and children's services.

The LAs that took part in this study were not able to provide data on the number of parents with an LD that had been involved with CSC or ASC with any accuracy although all were adamant that the number had increased over the years. Only two CSC departments provided data on the proportion of cases where a cognitive assessment in relation to a suspected LD had been conducted during pre- or court proceedings in 2022–2023: in LA1, it was 20% and in LA4 it was 11%. These figures indicate the need for a closer examination of the incidence and prevalence across England, including on families with an adult who has an LD who is supported by wider familial network (Durling et al., 2018).

In light of the circumstances around its initial and subsequent publication, and the lack of prominence given to it by government departments, it is not entirely surprising that there was a very low awareness of the Good Practice Guidance. On the other hand the Guidance has been referenced positively in several high court cases. So it is only possible to speculate as to why it is so hidden in LA social work practice. Unlike Working Together to Safeguard Children (latest version, HM Government, 2023), the Good Practice Guidance is not statutory guidance, and neither was it ever promoted by the two departments that published it in 2007. Since then both have both undergone changes of name and responsibilities. While the Good Practice Guidance has many strong elements it has evolved into a document that is not just guidance. It summarizes relevant research and court cases but omits elements of contemporary practice, which means it is difficult to see how it is accessible and even relevant to many practitioners.

Despite the fact that it has been referenced in court cases, the Ministry of Justice has never been involved in this Guidance. Based on findings from this study it would seem timely to revise the Guidance. Moreover, while case law demonstrates the lack of compliance with the Guidance, the ongoing divide between ASC and CSC indicates how important it is for some guidance to be in place. It would make sense to replace the current guidance with a document that that is developed by practitioners and service users across ASC and CSC and supported by DHSC, DfE, and the Ministry of Justice.

Revised guidance might help to improve the disconnect that was so evident between ASC and CSC and address the lack of communication between the two, as well as a lack of understanding of each other's roles and statutory responsibilities. This was particularly evident among those in CSC in relation to the Care Act 2014 where the provisions of Section 13 in relation to caring responsibilities for a child were rarely mentioned. Needs under the Act must arise from or are related to a physical or mental impairment or illness.

As a result of those needs the adult must be unable to achieve two or more of the specified outcomes without support. The provisions of Section 13 in relation to caring responsibilities for a child were rarely mentioned, nor was the link made with other outcomes. While there were many mentions of parents struggling to maintain their homes or engage in services in the community they were not seen as providing the evidence that these parents possibly met eligibility criteria for support. The Care Act was introduced during a period of national financial constraint which had continued, and which has impeded the achievement of its intended outcomes (Manthorpe, 2021; National Audit Office, 2015; Peckham et al., 2019). There was a similar lack of understanding of the Mental Capacity Act (2005) among those working in CSC. For example, one of its provisions is that every adult has the right to make their own decisions and must be assumed to have capacity to do so unless it is proved otherwise. Too often social workers in CSC were also unaware of the meaning of mental capacity and failed to understand that an assessment of capacity was time and decision-specific and not only based upon a condition.

Social workers in ASC displayed similar legal illiteracy about the Children Act 1989 and subsequent linked legislation, as well as the statutory guidance in Working Together to Safeguard Children, all of which form the basis for the children's safeguarding and child protection system in England. The Children Act 1989 places a duty on local authorities to “Safeguard and promote the welfare of children within their area who are in need and, so far as is consistent with their welfare, promote the upbringing of children by their families by providing a range and level of services to meet their needs” (Section 17). Although CSC will be the lead agency this work can only be achieved through multiagency co-operation and partnership working between all agencies working with the child and their family. The disconnect between the ASC and CSC means that too often they failed to work together to produce a holistic assessment of the family that responded to their needs. Although there was support for the principles of prevention, both ASC and CSC often had to prioritize meeting existing demand rather than investing in it. The result of the failure of services to provide appropriate support is undoubtedly leading to some children being removed from their families when it may have avoidable. This reflects the failure at national and local levels to assume a vision of co-ordinated support for families, and the fact that policies and services across different departments are often in conflict. Nothing represents the impact of this more clearly than the experiences of parents with an LD.

Strengths and limitations of the study

Confidence in the findings arises from the number of professionals who have contributed to the study and the consistency of the messages that emerged. This has provided the evidence to challenge the current deficits in policy towards parents with an LD and strengthened the argument for consistent national data collection. However, one intention in the research proposal had been to explore case records in the case study sites to identify how many parents with an LD have entered court proceedings over the period of one year. Even though a similar methodology has been applied in a previous study this was not approved at the HRA Research Ethics Committee stage. If this had been allowed to proceed it would have provided data that are not currently available.

There were many incidental comments about parents with comorbidities, particularly poor mental health and/or alcohol and substance dependency. In addition, there were also indications that parents from some ethnic groups were more hidden from view because of the high level of support provided by their families. The study did not explore these areas in any details where there is clearly the need for further work.

Conclusion

During the first 10 years of this century there was a raft of positive policy initiatives in England in relation to adults with an LD. Out of this movement the Good Practice Guidance for Parents with Learning Disabilities emerged in 2007. But much has changed since then. The divide between ASC and CSC has widened at the same time as the key drivers for both have changed and evolved. The attention given to policy and practice in relation to parents with an LD has diminished. The case for producing guidance that is relevant to practice and which is developed by those who will use it and those who will be impacted by it is evident. It would also be one step toward strengthening the relationship between ASC and CSC which is often not prioritized or nurtured. This is to the detriment of families whose members are interdependent, irrespective of their age and needs.