Parents of children with special educational needs face ‘lonely and uncertain journey’ accessing childcare

Families of babies and toddlers with special educational needs and disabilities (SEND) face complex and fragmented support systems when trying to find suitable child care, often at a considerable emotional cost.

A new report shows how much mothers depend on informal support and emotional reassurance from individual preschool workers. This includes interpreting official communications, referrals to specialist support and trying to find and choose appropriate child care options.

Many of those who took part in the research said they lacked a “conceptual map” that would allow them to identify, name or understand what was happening to their child. They were uncertain about what support was available and appropriate. This can make them feel lost, delay their seeking help and make it harder to assess appropriate support.

The study highlights a paradox: While an official diagnosis may help some families access services and practitioners better understand the child’s needs, it can also inadvertently create barriers when providers are unable to accommodate a child with a diagnosed developmental condition or when families hesitate to disclose the child’s needs because they fear stigma or being unable to secure a place.

The study was carried out by Angeliki Kallitsoglou, Kristi Dingwall and Rebecca Georgis from the University of Exeter and Cristina Motoca from Alton Community Playschool. They interviewed 11 mothers whose children were mostly ages 2 to 4 and 13 preschool or childcare practitioners.

One child had an education, health and care plan, and four children were in the process of obtaining one. Four children had either a diagnosis of or suspected autism spectrum disorder (ASD), and two of those children also had suspected attention-deficit/hyperactivity disorder. Three of the remaining seven children had informally diagnosed speech, language and communication difficulties, one had global developmental delay and one had glue ear.

Dr. Kallitsoglou said, “The experience of accessing early years education or child care for families with children with identified or emerging SEND can be a lonely and uncertain journey that places a significant emotional burden on mothers as they navigate a complex, fragmented and poorly signposted system.

“For many, preschools and nurseries are important information and support hubs, especially for lone mothers, those who are less confident in advocating for their child and those with limited access to support networks. However, this support is provided inconsistently and often depends on practitioners going above and beyond, underscoring the need for more coordinated and systemic support.”

The researchers advise that the government’s new Best Start Family Hubs policy provides an opportunity to offer families with children with identified or emerging SEND meaningful brokerage and system-navigation support and to facilitate better collaboration and communication across early years child care and education, health care and social care to reduce fragmentation and ensure a coherent, joined-up system of support.

They call for a shift to needs-led rather than formal diagnosis-led support in early years practice, specifically in relation to how SEND support is funded and accessed, and for the early years workforce to be equipped in its role as trusted sources of family support through training in inclusive, relational, trauma-informed practice.

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Lisa Lock

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Andrew Zinin

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