National policy on access to services for children with disability or developmental delay: Working together to support children and families

Abstract

Introduction : Health services in Ireland for children with disabilities or developmental delay have developed piecemeal over time, usually with access only for specific cohorts of children with a particular diagnosis. This means there are gaps and inconsistencies with some children unable to access any service. Referrers, including acute services, have had great difficulty in finding out where to refer a child, leading to frustration for families and inefficiency. Furthermore there has been a deficit in connectivity between acute services, disability teams and primary care services. Description of policy context and objective : Children’s disability services are being reconfigured under the Progressing Disability Services for Children and Young People programme into interdisciplinary Children’s Disability Network Teams for all children with complex needs, and Primary Care paediatric services are being planned for children with non-complex needs who require a multi-disciplinary response. The national policy will provide for consistent, equitable access to these services across the country and a smooth care pathway between acute services, disability teams and primary care services. Targeted population : All children aged from birth to 18 years who have a disability or developmental delay and their families. Highlights : The new national policy is based on the principles of the ICF[1]. It was tested in demonstration sites with wide consultation across sectors including parents and peer review. Access to services will be according to the child’s needs rather than bound by their diagnosis. Complexity of the child’s needs will be determined by considering the impact of impairments on function and participation. In each geographic area there will be an Integrated Children’s Services Forum with representatives of Primary Care, Social Care Disabilities, Mental Health and Acute Services, the Education sector and the Child and Family Agency Tusla. The Forum will decide on the best pathway for any child where this is not clear, and on shared care pathways, for instance children with complex medical needs or with co-morbid health issues. The policy will be implemented area by area during 2017. National training is being provided for staff in both Primary Care and Disability services on the operation and decision making process. Monitoring of the implementation will include collection of data to review consistency, and focus groups with staff and families to gather qualitative feedback on effectiveness. Comments on transferability : Joint development of policy progresses co-ordination of care pathways and elimination of gaps and duplication. The model of the Integrated Children’s Services Forum to resolve issues concerning individual pathways is currently being considered by other sectors. Conclusion : This policy represents a significant change of direction for services from separate criteria bound sectors to a cohesive care pathway. The process of developing and implementing the policy is promoting the team approach and bringing staff in different services together to work jointly towards individual child and family outcomes. The implementation of the policy will be subject to detailed monitoring and evaluation of effectiveness and outcomes. References : 1- World Health Organisation. International Classification of Functioning, Disability and Health – Children and Youth Version. World Health Organisation. 2007