Section 4 - Management of diagnosed conditions

1. What is a developmental delay or disability in children? ^1–8

• Development is influenced from pre-conception by the environment and postnatally by relationships with primary caregivers
• Development describes the child’s ability to adapt over time to achieve increasing complexity of function (milestones) across domains including:
  • fine and gross motor skills
  • speech and language
  • cognitive skills
  • social and emotional skills
• Skills develop incrementally within these domains
• Rates of development will vary within a child’s age range. See Developmental milestones
• Developmental delay is a lag in the acquisition of milestones expected at a particular age
• Types of developmental delay include:
  • Global – when children have delays in at least two domains
  • Transient – due to prolonged illness, hospitalisation or family stress, prematurity or lack of opportunities to learn e.g. a premature baby who shows a delay in sitting or a child whose speech is affected by frequent ear infections, then progresses at a normal rate after intervention
  • Persistent (developmental disability) – conditions that cause impairment in physical, learning, language, or behavioural domains. They can:
    • be events that occur before, during or after birth. See Table 1.
    • impact on a child’s optimal functional ability over their life. See Table 1.
    • result in complex and pervasive developmental difficulties
• Early detection can minimise long term complications and improve outcomes
• Children will require a variety of supports at critical periods during their lives

2. Diagnosis of developmental delay or disability in a child ^2–8

• Diagnosis is made by regular history and examination Developmental milestones
• History features include:
  • skills that are not acquired
  • skills that do not progress
  • regression in skills or unusual behaviours
  • medical risk factors e.g. prenatal exposures (e.g. alcohol), prematurity, disability, genetic factors and syndromes, prolonged illnesses, temperament, behaviour, abuse and neglect and stressful life events. See Table 1.
  • family risk factors e.g. parental psychopathology, family dysfunction, domestic violence, poverty, substance use, family structure
  • community risk factors e.g. rural and remote, access to regular healthy food
• Physical examination may reveal birth defects, weakness, poor co-ordination, poor growth, and hearing and vision problems. See Table 1.
• Screening is undertaken using validated tools, such as the ‘Red Flag’ guide, to identify developmental delay or disability. See Resource 1.
• A diagnosis will be a stressful time for families. Build a partnership and provide support. See Engaging our patients

3. Management of a developmental delay or disability in children ^1–3,9,10

• Management involves building a therapeutic partnership with parents to support the child to live a healthy productive life by:
  • supporting their emotional needs so they feel secure and loved
  • providing a safe, engaging environment where they can explore, experiment and develop their skills
  • being available to them when they need help, care or attention
  • dealing consistently with inappropriate behaviour
• Identifying the strengths of the child and parent early assists with goal setting, monitoring development and achieving best outcomes

1. Support child and family self-management ^1,2,3,8,9
   • Provide resources and support service information. See Resource 3–10.
   • Practical social supports may include:
     • therapy interventions
     • community supports
     • services available from education department
     • respite
     • carer allowance financial assistance
   • Provide practical strategies to support children. See Table 2.
   • Anticipate the long-term impact of developmental delays or disabilities at different ages to help families plan support over time. Discuss:
     • expected challenges at birth, early childhood, school entry, puberty and transition to adulthood
     • a progressive lifelong picture of childhood strengths and difficulties
   • See Resource 3. for characteristics and strategies for specific developmental disabilities
   • Encourage the child and family to identify barriers to adequate lifestyle modification and medical adherence and create goals to overcome those barriers. See Engaging our patients
2. Social-emotional support ^1–3,8,9
   • Great stress can be placed on parents and carers who may be unaware of the needs of children with a developmental delay or disability. See Table 2.
   • Assess their Social-emotional wellbeing

3. Exposure to violence, abuse or neglect ^1,2,10
   • Rural and remote clinicians should be mindful that:
     • the nature of permanent brain changes affecting child development from exposure to sustained:
       • witnessing or experiencing domestic violence
       • inconsistent parenting due to mental health, drug or alcohol use
       • emotional, sexual or physical abuse or neglect
       • racism, colonisation, sexism, homophobia, displacement or war
     • these children are more likely to experience lifelong:
       • poor growth, oral health, hearing, vision and eating problems
       • bullying, peer assault, harm and further abuse
       • persistent fear (even when removed from harm), hyper-arousal, internalising emotions and diminished ability to function
       • judicial contact, poor lifestyle behaviours (higher rates of diabetes and cardiovascular disease), socioeconomic inequality, compromised productivity and mental health problems
       • emotional and behavioural disturbances and an inability to develop trusting relationships
   • Actively engage with local service partners to advance the child’s health and welfare e.g. consent, information sharing, court orders, changes of carer or case worker and communication
4. Children in out of home care (OOHC) ^1,2,10,13
   • Two main factors influence whether these children will enter OOHC:
     • evidence of abuse, neglect or harm and
     • risks to growth and development, including failure to thrive. See Poor growth (child)
   • Children living in OOHC often experience:
     • domestic violence, parental substance use, socioeconomic disadvantage, homelessness and parental imprisonment
     • repeated attempts at reunification with birth or extended family
     • family access that may be planned or unplanned
     • placement breakdown
     • multiple placements prior to long-term placements being identified
     • multiple changes in childcare or school
     • changes to culture, language and location
   • Assess and address impacts on a child in OOHC:
     • stress and Anxiety disorders
     • behaviour and ability to cope with change
     • see Resource 1.
   • Refer to child health nurse, social worker or psychologist as necessary
5. Education ^{2,3,8,10–12}
   • Children with developmental delays or disabilities or those living in OOHC are educationally disadvantaged and are more likely to:
     • be over represented in special education
     • miss school, repeat year levels, be suspended and excluded
     • leave school early and less likely to enrol in tertiary education
     • be older than other children in their grade
     • attend more schools than other children
     • struggle with the stimulating, demanding and complicated classroom environment and homework
   • Ensure family are engaged with education services such as early childhood development programs and school guidance officers. See Resource 7.
6. Early intervention support services ^{1–4,8,11,12}
   • Refer to multidisciplinary child development services for assessments, interventions and management for delays in multiple developmental domains:
     • speech pathologist
     • occupational therapist
     • physiotherapist
     • psychologist
     • child health nurse
     • paediatrician
     • mental health team
     • social worker
   • Assist the parent or carer to access services. See Resources 8–10. Consider:
     • the Department of Seniors, Disability Services and Aboriginal and Torres Strait Islander Partnerships
     • National Disability Insurance Scheme (NDIS)
     • Children’s Health Queensland Hospital and Health Service and Ellen Barron Family Centre
   • Consider practical local social supports such as:
     • daycare
     • mums and bubs groups
     • playgroup
     • local community services
   • Encourage parents to attend a behaviour or attachment-based parenting program that promotes strategies and skills to deal with challenging child behaviours. See Resource 11.
7. Carer support ^{1–4,10,11,13}
   • Caring for a child with a developmental delay or disability can:
     • be time consuming and difficult
     • be resource intensive
     • require intensive care and supervision
     • require high-level health service co-ordination
   • Many carers of children with developmental delay or disability are foster carers, grandparents or other kin, rather than biological parents
   • Prepare, encourage and empower parents and carers to:
     • engage in service coordination and intervention
     • actively participate in educational interventions
     • navigate the ‘system’ over time, particularly at key developmental stages
     • understand future outcomes and if any impacts are likely to be ongoing
     • understand the steps that can be taken to optimise outcomes
   • Refer to visiting carer support services, social worker and psychologist
   • Referral to respite allows parents and carers to have a break and address their own needs. See Resource 5–6
8. Monitoring ^1–4,9,13

• Regularly monitor child’s physical health, growth and nutrition. See Section 3. Child health checks
• Refer any irregularities to MO/NP or paediatrician who may order further investigations

4. Medicines for a child with a developmental delay or disability ²

• No medicines are recommended for the broad treatment of developmental delay or disability
• Medicines may be required to help with certain symptom complexes at the discretion of the treating specialist

5. Cycle of care

6. References

• All Chronic Conditions Manual references are available via the downloadable References PDF

7. Resources

1. The PEDS screening tool or the Ages and Stages Questionnaires (ASQ) or the Eyberg Child Behavior Inventory (ECBI) or the “Red Flag” Early Intervention Referral Guide for children 0–5 years
2. Do2Learn a resource for individuals with special needs
3. Makaton: alternative communication methods
4. Carers Australia or Queensland
5. Carer Gateway respite information
6. Queensland Government Education Department support for students with disability
7. Department of Women, Aboriginal and Torres Strait Islander Partnerships and Multiculturalism
8. National Disability Insurance Scheme (NDIS) and NDIS requirements and application
9. Children’s Health Queensland Hospital and Health Service and Ellen Barron Family Centre and
10. Raising Children Network
11. The Positive Parenting Program (PPP) and the Circle of Security (COS) parenting program