Disclaimer: This is a proprietary science and methodology of the New Horizons Child Development Centre which has been approved by a BND Program committee consisting of Dr. Bakul Jayant Parekh, Dr. G. V. Basavaraja and Dr. Jagdish Chinappa.

The Need 

Approximately 10% of all children visiting our pediatricians are estimated to have special needs¹ and most of them do not get the needed early or adequate support. 

Almost one in eight children of the age 2–9 years have at least one of the nine neurodevelopmental disorders (ASD, ADHD, SpLD, etc.).² Autism Spectrum Disorder (ASD) has a prevalence of 1 in 65 children (2-9 years of age)³ , ADHD has a prevalence of 11.3% in primary school children⁴ and Specific learning disability (SpLD) has a prevalence of  3–10% among student populations.^{5, 6}

Till date there is no single best treatment option available and accessible for all children with neurodevelopmental disorders⁷. The diagnosis of behavioral and neurodevelopmental disorders needs the involvement of an interdisciplinary team working together under the guidance of a developmental behavioural pediatrician³. 

Because of this, the vast majority of these children do not reach their potential to be performing, well-adjusted and independent members of society.⁷

Significantly large number of children with neurodevelopmental disabilities are referred late for intervention services by parents, leading to loss of opportunity for early intervention⁸. Moreover, pediatricians are not sufficiently trained to recognise these issues early. Also, pediatricians are often caught up in other aspects of clinical practice and too busy to regularly follow-up for compliance and improvement of NNDs.⁷  

Even after detection, there is a lack of awareness among pediatricians and parents of the need for multi-dimensional yet interdisciplinary, 360-degree, holistic intervention. There is also limited emphasis on the role of the parents in ensuring compliance and for improvement in the child⁷. Attention is focused on learning of clinic based “activities” rather than the holistic improvement of the child and seamless integration and inclusion in community and society.  The pediatric clinic lacks access to trained, developmental support program that delivers intervention which conforms to modern, effective and holistic science and methodologies.

The IAP Solution 

The Behavioral and Neuro Development (BND) program is a national program for early detection of behavioral and neurodevelopmental disorders and to ensure multi-dimensional intervention and support for children who are highly likely to benefit from the parent’s newly learned skills.

Program components

1. Developmental concerns reported by families; families awaiting formal evaluation and diagnosis. (An exact diagnosis is not necessary to begin early intervention – American Academy of Pediatrics guidelines.)
2. Simple detection guidelines and Red Flags for our pediatricians. 
3. Assessment and diagnosis of behavioral and neuro developmental concerns. 
4. An individualized intervention program developed by developmental behavioural pediatrician.
5. Regular follow-ups to ensure compliance of the intervention program and for support.
6. An education and coaching program for parents to ensure improvement in the child through appropriate parent support. 
7. Regular consultation with developmental behavioural pediatrician to evaluate the clinical progress of child and for subsequent intervention advice. 

Pilot Objectives 

1. To test acceptance by pediatricians and parents
2. To test the effectiveness of “Red Flags Guideline”, which will be used by doctors to identify the need for a behavioral and neuro development assessment.
3. To test the effectiveness of the service delivery methodology and parental education content.
4. To test the effectiveness of the behavioral and neurodevelopmental intervention in children.
5. To test the financial sustainability of the service.

Success Criteria

1. Confirm the effectiveness of the Red Flag Guidelines – We shall consider the Guideline effective, if the behavioural and neuro development assessment confirms deficiencies in three fourths or more of the children who are advised an assessment by the paediatrician.
2. Assessment Compliance – We shall target that the interventions recommended are implemented by the parents in an effective manner and child benefits from the interventions recommended.
3. Sustainability – Confirmation that the pilot follows a financially sustainable model and therefore can be expanded further

Inclusion criteria 

1. Child with developmental delays and behavioural concerns in the age range 0-18 years. (Annexure 1)
2. Developmental concerns reported by families; families awaiting formal evaluation and diagnosis.
3. Children who have developmental needs that can be addressed through parent -implemented intervention, are responsive to the parent and enjoy interacting with them. 
4. Parents amenable for online coaching program and can participate online; consider being involved a priority for themselves and child; have sufficient time and inclination to participate; are willing to make a short-term commitment; are supported by other family members and close friends).

Exclusion criteria

1. Extreme severity of neurodevelopmental conditions.
2. Multiple co-morbidities.
3. Acute conditions. 
4. Child facing neglect and abuse at home. 
5. Scarcity of time, resources and priority of the parents to be involved within the program.

Program Strategies for assessment and intervention

• Create a safe and supportive environment for learning.
• Set goals for the child and for the parent collaboratively with parent.
• Focus on the child and the child’s development first by helping change parent behavior.
• Apply principles of responsive interaction in interactions with parent: listen, respond, balance turns; coach the parent: behavior and communication, praise, omit negative feedback, ask for clarification.
• Plan content and activities of individual sessions and the sequence of sessions to insure mastery of key behaviors.
• Teach both the behavioral principle and the specific application; provide multiple examples.
• Teach by using concrete, positive examples; provide supporting materials to illustrate examples.
• Include practice in implementing the procedures with the child in each session.
• Coach and give specific feedback to support parent during practice with child.
• Teach for generalization and maintenance; when possible teach across settings, involve other caregivers, provide booster sessions. 
• Adjust teaching style, teaching methods, criterion performance levels of parent and child, and feedback to the individual parent.
• Invite formal and informal feedback from parent at frequent intervals.

Annexure 1:

Conditions for which every child must undergo the Behavioral and Neuro Development Assessment:

1. Autism Spectrum Disorder (ASD) 
2. Attention Deficit Hyperactivity Disorder (ADHD)
3. Learning Disability (LD)
4. Cerebral Palsy (CP)
5. Intellectual Disability (ID)
6. Genetic and Syndromic Disorders
7. Anxiety 
8. Depression 
9. Behavioural, psychological, emotional and academic concerns of Adolecents

Recommended Process of identification of children who need Behaviour and Neuro Developmental consultation and the method of doing the consultation.

1. Identification of children needing Behaviour and Neuro Developmental consultation by a quick interview of the parents and the use of Red flags

2. Assessment methodology and supporting science

Elements of interviewing, evaluations, intervention and counselling will be in accordance with universally accepted recommendations as supported in IAP guidelines from time to time

3. Compliance enhancement methodology and supporting arguments  

The key intervention is based on the coaching parents by 

1. detection of red flags and timely referral
2. precisely identifying the concerns in the child
3. an accurate assessment of the diagnosis and level of functionality and /or support needed
4. exact tailoring of the easy to follow interventions appropriate to the child’s current level of development and functioning
5. step by step coaching about the methods/ behavioural change/intervention to be applied 
6. regular, time bound appraisal of the improvement in the child’s developmental and functional level by the Pediatrician as well as the Developmental Pediatrician 
7. communicating the improvements and challenges and three monthly reports to the parent via the pediatrician.

References

1. Ministry of Health and Family Welfare Government of India. Rashtriya Bal Swasthya Karyakram (RBSK) Child Health Screening and Early Intervention Services under NRHM. Oper Guidelines. 2013.
2. Arora NK, Nair MKC, Gulati S, Deshmukh V, Mohapatra A, Mishra D, et al. (2018) Neurodevelopmental disorders in children aged 2–9 years: Population-based burden estimates across five regions in India. PLoS Med 15(7): e1002615. https://doi.org/10.1371/journal.pmed.1002615
3. Dalwai S, Ahmed S, Udani V, Mundkur N, Kamath SS, Nair MKC. Consensus statement of the Indian academy of pediatrics on evaluation and management of autism spectrum disorder. Indian Pediatr 54, 385–393 (2017). https://doi.org/10.1007/s13312-017-1112-4.
4. Dalwai S, Unni J, Kalra V, Singhi P, Shrivastava L, Nair MKC. Consensus Statement of the Indian Academy of Pediatrics on Evaluation and Management of Attention Deficit Hyperactivity Disorder. Indian Pediatr. 2017 Jun 15;54(6):481-488. doi: 10.1007/s13312-017-1052-z. Epub 2017 Mar 29. PMID: 28368271.
5. Nair MKC, Prasad C., Unni, J, Bhattacharya A, Kamath SS, Dalwai S. Consensus statement of the Indian Academy of Pediatrics on evaluation and management of learning disability. Indian Pediatr 54, 574–580 (2017). https://doi.org/10.1007/s13312-017-1071-9. 
6. Karande S, D’souza S, Gogtay N, Shiledar M, Sholapurwala R. Economic burden of specific learning disability: A prevalence-based cost of illness study of its direct, indirect, and intangible costs. J Postgrad Med. 2019 Jul-Sep;65(3):152-159. doi: 10.4103/jpgm.JPGM_413_18. PMID: 31169134; PMCID: PMC6659427.
7. Klin A, Jones W. An agenda for 21st century neurodevelopmental medicine: lessons from autism. Una agenda para la medicina del neurodesarrollo en el siglo XXI: lecciones aportadas por el autismo. Rev Neurol. 2018;66(S01):S3-S15.
8. Juneja M, Jain R, Chakrabarty B, Mishra D, Saboo P. Indian children with developmental disabilities: early versus late referral for intervention. Indian J Pediatr. 2014 Nov;81(11):1177-81. doi: 10.1007/s12098-014-1344-4. Epub 2014 Apr 3. PMID: 24691576.
9. Kaiser, Ann P.; Hancock, Terry B. Teaching Parents New Skills To Support Their Young Children’s Development. Infants and Young Children, v16 n1 p9-21 Jan-Mar 2003.