Meeting special needs at school

Authors

Jaekel J, Wolke D, Huening B, Khonyongwa-Fernandez G, Johnson S

Target group

Infants born very preterm (VP) or those infants with perinatal risk factors for developmental problems or disorders (see preamble Follow-up & continuing care) and their parents

User group

Healthcare professionals, education policy makers, teachers (early childhood to tertiary education), educational psychologists, neonatal units, hospitals, follow-up teams, and health services

Statement of standard

Developmental progress and school readiness of infants born very preterm or with risk factors for developmental problems or disorders are assessed 6-12 months prior to initial entry into formal schooling, and a protocol is established for the provision of support for children identified to have difficulties. Teachers receive training about the potential special educational needs of children born VP or with risk factors for developmental problems or disorders.

Rationale

The goals are to (i) evaluate school readiness prior to initial entry into formal schooling to inform educational provision and support, and (ii) provide information and training to education professionals to increase their awareness and knowledge of how to support the learning of all children born VP or with perinatal risk factors for developmental problems or disorders.

Children born VP have an increased risk for poor academic attainment, learning difficulties, and special educational needs. (1–5)

By school age, parents, teachers, and even health professionals may expect that children born VP will catch-up with their peers and outgrow their early difficulties, however longitudinal research shows that, as a group, individuals born very and extremely preterm do not catch-up with term-born peers with persistent deficits in IQ and educational attainment to the end of formal schooling. (1,6) In addition, children without severe disability are frequently discharged from neonatal follow-up programmes at the age of two. (7,8) This means that opportunities for early recognition of special educational needs are missed. At the same time, parents of children born VP often worry that their child may be too immature to start schooling and consider delayed school entry. (9) This worry may not always be confirmed by expert assessments (10), especially when considering that support by educational experts in school may be more beneficial than the child “maturing” at home. Evidence also shows that teachers lack knowledge and formal training about VP children’s educational needs and how to facilitate their learning. (11,12) Professional development for teachers is needed, for instance using e-learning resources that can improve teachers’ knowledge and confidence in supporting VP children in the classroom. (13) (see www.pretermbirth.info)

Benefits

Short-term benefits

N/A

Long-term benefits

Early identification of children at risk for learning difficulties (2,14,15)
Timely development of an individualised education plan and initiation of intervention for children with developmental problems or poor school readiness prior to initial school entry (consensus)
Informed decisions about educational provision (consensus)
Increased provision of training for education professionals (about the special educational needs of some very preterm children) (consensus)
Potentially improved educational outcomes and life chances (consensus)
Improved quality of life for preterm children and their families (consensus)
Informed parental counselling and participation in educational decision making (consensus)
Improved communication between parents, teachers, and healthcare professionals (with parental consent) (consensus)

Components of the standard

Component

Grading of evidence

Indicator of meeting the standard

For parents and family

Parents are informed by healthcare professionals about long-term developmental and educational outcomes of children born very preterm and invited to attend a follow-up programme, which includes screening for school readiness 6-12 months prior to primary school entry, including screening for attention, cognitive, motor, sensory, language, and social-emotional problems. (1,9,16–19,20)

A (High quality)
B (High quality)

Patient information sheet¹

Parents receive feedback about the results of their child’s assessment in a language that is accessible to them, and they are informed about relevant educational policies (e.g., regarding school starting age and provision of support). (11)

B (Moderate quality)

Parent feedback, patient information sheet¹

Parents of children identified at risk for developmental problems or poor school readiness are offered appropriate support prior to school entry, and throughout schooling. (7)

A (Moderate quality)
B (Moderate quality)

Guideline, parent feedback

Parents are asked for consent to share the results of their child’s screening and/or developmental tests with their child’s school upon entry. (12)

B (High quality)
C (High quality)

Parent consent

For teachers (early childhood to tertiary education), educational psychologists, and healthcare professionals

A guideline on screening for developmental problems and poor school readiness, (e.g. attention, cognitive, motor, language, social-emotional, early academic skills, and sensory processing) carried out 6-12 months prior to school entry is adhered to by all responsible professionals. (12,21–25)

A (High quality)
B (High quality)

Guideline

Regular training on screening for developmental problems and educational needs of children born very preterm is attended by all responsible professionals.

B (High quality)

Training documentation

For neonatal unit, hospital, and follow-up team

A unit guideline on screening for developmental problems and school readiness is available and regularly updated, including a pathway manual for support services provision.

B (High quality)

Guideline

Training on standardised screening for developmental problems and poor school readiness is ensured.

B (High quality)

Training documentation

For health and education policy makers

A national guideline on screening for developmental problems and school readiness is available and regularly updated, including a protocol for children with problems detected during screening.

B (High quality)

Guideline

Pathways and a legal framework are established for obtaining parental consent and sharing of information between parents, health and education services.

C (High quality)

Information sharing protocol and legal guidelines

¹The indicator ‘patient information sheet’ is an example for written, detailed information, in which digital solutions are included, such as web-based systems, apps, brochures, information leaflets, and booklets.

Where to go

Further development

Grading of evidence

For parents and family

Provide funding for disadvantaged families to participate in screening services. (13,26,27)

A (High quality)

Provide resources to encourage parents to participate in their child’s educational support planning. (13,26,27)

A (High quality)

Provide translation services and culturally fair assessments to offer screening in families’ home languages.

Train parents on strategies to best support their child’s educational development.

For education/healthcare professionals

Develop teaching methods and strategies that help provide tailored support for very preterm children in the classroom. (28)

A (High quality)

For neonatal unit, hospital, and follow-up team

N/A

For health service

Establish system for data sharing between education and health providers.

B (High quality)

Getting started

Initial steps

For parents and family

Parents are informed by healthcare professionals about the importance of developmental screening and assessment, and the sharing of information with schools and education professionals.

For teachers (early childhood to tertiary education) and healthcare professionals

Define what school readiness entails according to national or regional policies and identify age-appropriate screening tools or formal tests.
Complete training on screening for developmental problems and educational needs of children born very preterm (professionals providing follow-up and screening services, e.g., www.pretermbirth.info).
Attend training on providing feedback and advice on educational needs to parents and children themselves.

For neonatal unit, hospital, and follow-up team

Develop and implement a guideline on screening for developmental problems and school readiness. Inclusive of how to effectively communicate information to parents.
Develop information on follow-up including developmental screening and assessment of school readiness for parents.
Establish a clinical pathway from discharge to screening at 6-12 months prior to school entry.

For health services and policy makers

Develop and implement a national guideline on screening for developmental problems and school readiness.
Initiate data linkage between health and education service providers.
Explore legal guidelines and parental consent framework.

Children born VP have an increased risk for poor academic attainment, learning difficulties, and special educational needs (1–5). Rates of special education provision vary widely between countries. In the Netherlands, for instance, 10% of children born VP received special education at 12 years of age (29), in Germany the rate is >15% (30), and in Scotland the rate is 15% among children born VP compared with 5% among those born at term. (2)

Neurodevelopmental sequelae include poor attentional (21,22) and inhibitory control (23), slower processing speed (31), problems with gross and fine motor skills and visual-motor integration (24,32,33), deficits in executive function and working memory (25,34), general cognitive impairments (35,36), language problems (37), and difficulties with sensory processing. (38) These abilities are important prerequisites for learning (39,40) and deficits in these areas may limit children’s abilities to benefit from formal instruction in all school subjects, particularly in mathematics (4,5,16,17,41,42). Children born VP are also at risk for social and emotional difficulties which may impact their relationships with peers (18,19,28,43) and attainment at school (see Follow-up & continuing care).

While individual developmental trajectories vary, evidence shows that the cognitive delays and academic difficulties of very preterm children may persist into stable impairments throughout adolescence and adulthood. (1,17,20,44) With regard to education policies, support and inclusion of children with special needs are basic human rights (26), but these are often curtailed by systemic barriers (27,45-47). While education systems and policies differ between countries and regions, multi-level, multi-professional approaches that foster early identification of difficulties and individually tailored support may help all children achieve their full potential. (48)

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