QualitativeJournal of applied research in intellectual disabilities : JARID2025

Unseen and Invisible? Issues of Recognition for Parents With Intellectual Disabilities Accessing Social Work and Social Care Services for Adults in England.

Beth Tarleton, Gillian MacIntyre, Danielle Turney and 1 others

PMID 40754467

WHAT IT FOUND

Parents with mild or borderline intellectual disabilities are often invisible to adult social care.

They fall between specialist teams that require a low IQ score and general teams that lack specific training. This gap leaves them without support unless they navigate complex eligibility rules.

Key findings

01Parents with mild or borderline intellectual disabilities often occupy a 'no-man's land' between specialist intellectual disability teams and general adult services.

02Access to specialist intellectual disability teams is frequently restricted by strict IQ-based eligibility criteria, such as requiring an IQ below 70.

03General adult social work teams often lack the specialist knowledge and confidence to assess and support parents with intellectual disabilities effectively.

STILL TO COME

How it was doneWhat they found

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What it does not show

The study focused on a specific legislative context in England (the Care Act 2014), which may limit its direct applicability to other jurisdictions. Participants were social workers and managers, so the findings reflect professional perspectives rather than the lived experiences of the parents themselves. The sample size was smaller than originally planned due to the time pressures on social workers and the sensitive nature of the topic. The study highlights systemic and policy barriers, which are outside the direct control of individual clinicians.

The easy way to misread this

Do not interpret the lack of support as a failure of individual clinicians. The findings suggest that systemic resource constraints and rigid eligibility criteria, rather than personal negligence, are the primary drivers of invisibility for this group.

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The study

Participants
18 key informant interviews and 14 focus groups
Certainty of evidence
Very low

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    Cite

    Beth Tarleton, Gillian MacIntyre, Danielle Turney, et al. Unseen and Invisible? Issues of Recognition for Parents With Intellectual Disabilities Accessing Social Work and Social Care Services for Adults in England. Journal of applied research in intellectual disabilities : JARID. 2025.

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