How parents with learning disabilities lack support before, during and after care proceedings

By Mary Baginsky

Just a quarter of people with learning disabilities (26%) are on their GP surgery’s learning disability register, according to research published this year by the Nuffield Trust.

This indicates the majority are not known to services, including social care. Similarly, we know many parents with a learning disability manage without calling on services.

In research published earlier this year, Professor Rick Hood and colleagues found that a reference to a ‘parental learning disability’ appeared in 3% of assessments carried out by children’s social care.

Increased risk of having children removed

But this does not reflect how many cases emerge once parents are in child protection or during family court proceedings (Hood et al, 2024). We know that parents with a learning disability are disproportionately represented in care proceedings and are much more likely to have children removed from their care (Booth, 2003).

Over the past two years, I have worked on the largest study that has been conducted in England into how adults’ and children’s social care work with parents with a learning disability.

Funded by NIHR School of Social Care Research, it started out as a project that looked at the support available from adult social care when children were removed from parents with a learning disability following care proceedings.

‘Minimal support’ from adult social care

It quickly became apparent that in many cases this was minimal and that it was more important to examine what was happening before that point.

After discussions with over 80 professionals across law, social care, health and advocacy, and fieldwork in 22 local authorities, including in-depth multi-professional case studies and interviews with parents, the deficits in the system were only too clear.

While there were pockets of good practice, often where a dedicated learning disability team was embedded in adult social care, most children’s social workers struggled when dealing with parents with a learning disability or where one was suspected.

Care Act eligibility criteria

To meet the national minimum threshold for eligibility for care and support, an individual must meet three conditions:

• they must have needs which arise from, or be related, to a physical or mental impairment or illness, such as a learning disability;
• they must be unable to achieve two or more of 10 specified outcomes, one of which relates to carrying out any caring responsibilities for a child;
• and, as a consequence of this inability, there is, or there is likely to be, a significant impact on the adult’s wellbeing.

The challenge of meeting threshold

Lawyers interviewed for the research found it hard to believe that their clients would not meet at least one other of the specified outcomes, particularly maintaining a habitable home or managing and maintaining nutrition.

However, unless the learning disability had a moderate to significant impact on a parent’s day-to-day life, it would not trigger support.

It is the degree of learning disability which secures any service from adult social care, and it was rare to encounter a case where adults’ services were involved with a parent.

Support can make ‘tremendous difference’

Where they were, it sometimes made a tremendous difference to the support parents received.

For example, in one authority, where there was an integrated learning disability service, this contributed to assessments that focused on identifying what needed to be in place to enable parents to ‘parent’ as well as ensure the safety of the child.

Elsewhere, it was often the commitment of individual social workers that led them to argue for resources or to build contact with other agencies, including children’s social care, and be determined to stay in the picture.

Adults’ practitioners ‘deferring to children’s colleagues’

But too often, perhaps as a result of demand and workloads, adult social care seemed to retreat in the face of child protection and defer to colleagues in children’s services.

However, children’s practitioners may not be proactive in keeping adults’ colleagues updated, for example, by inviting them to child protection conferences.

Lack of legal literacy

It was evident that many social workers in children’s social care had not received training on learning disabilities or the Care Act.

So, unless they worked or had worked in a team where that was some degree of specialism, it was difficult for them to develop the necessary confidence and skills.

Similarly, one lawyer, an expert on the Care Act 2014, recognised that child protection lawyers are usually not experts in adult social care and did not realise that their clients had not been treated lawfully when it came to accessing care and support.

There were real challenges when parents were not on the radar of any services. Social workers may fail to recognise that a parent may have a learning disability, or they may not be sufficiently curious or fail to act on instinct.

Confusion between learning disability and learning difficulty

This may be further complicated by the confusion between learning disabilities and learning difficulties. The importance of social workers and others being aware of the difference is closely tied to the support which someone needs.

A learning difficulty does not impact on someone’s intellectual ability, and the person is able to learn, even if certain barriers have to be overcome. Adult social care is very unlikely to become involved in these cases.

Someone with a learning disability will require support to function, dependent on the level of the disability. Though this brings them into the orbit of social care, adults’ services were also unlikely to become involved unless they were already working with a family.

Shortages of advocates and intermediaries

There are also many holes in the system through which parents with learning disabilities could fall as they pass through child protection and court processes.

Advocates and intermediaries, who support vulnerable people to give evidence in court, might be there to support that journey, but there are shortages of both, as well as the budget to support them.

In addition, intermediaries fear that family courts will be reluctant to appoint them to provide support for parents throughout care proceedings, including in cases in which it may be difficult to determine in advance the requisite nature and extent of their involvement.

This is because the observation of Mrs Justice Lieven, in West Northamptonshire Council v KA and Others [2024] EWHC 79 (Fam), that criminal justice guidance that appointment of an intermediary for a whole trial should be exceptionally rare is equally applicable to the family courts.

There is a long history of court cases involving parents with learning disabilities, which has established a body of case law and principles.

Councils criticised by courts for not following guidance

Some judgments have criticised local authorities for not applying the Good Practice Guidance on Working with Parents with a Learning Disability, published in 2007.

The guidance, produced by the then Department of Health and Department for Education and Skills, was intended to improve both the support for parents with a learning disability and the chances of their children continuing to live with them.

On one level, judicial criticism of the failure to follow the guidance is valid – our research unearthed how little awareness of it there is across adult or children’s social care. But any blame should be shared with successive governments, who have failed to promote it.

Government’s failure to promote or update guidance

While the guidance has been updated since, most recently in 2021, this has not been by government, but by the Working Together with Parents Network, based at Bristol University.

Since it first appeared, many changes have occurred across children’s social care – including many iterations of the Working Together to Safeguard Children statutory guidance.

While the principles embedded in the learning disability guidance remain valid, it is time for new guidance to be developed, in partnership with professionals in adults’ and children’s services, as well as with parents and their advocates.

Need for statutory guidance

Such guidance should be statutory, meaning councils and relevant bodies would be required to follow it other than in exceptional circumstances.

It should identify clear pathways for assessment and support, as well as training that should be in place according to responsibilities held.

It should also be aligned with the Department for Education’s children’s social care reform programme, which emphasises family support, family networks and kinship care – assuming this agenda survives the general election.

The government would then need to promote it and courts would be justified for criticising local authorities when it was not applied.

Applying the same standards to all

Removing children from their parents is an extremely serious action for the UK state to take.

It is then incumbent on that state to make sure that the same standards are applied to all. At the moment parents with a learning disability are at danger of being failed.

Mary Baginsky is reader in social care at the NIHR Health & Social Care Workforce Research Unit at King’s College London. 

References

Booth, T. (2003) Parents with learning difficulties, child protection and the courts. Representing Children, 13, 3, 175-188

Hood, R., Goldacre, A., Clements, K., Jones, E., King, A., Martin, E. and Webb, C. (2024) Studying the outcomes of children’s social care provision for different types of demand. London: Nuffield Foundation, Kingston University and National Children’s Bureau