Priority 2 from the Neurodevelopmental Disorders Canada PSP

UNCERTAINTY: How can system navigation be organized in a manner that enables coordinated services and supports across the lifespan for individuals with neurodevelopmental disorders and their families? (JLA PSP Priority 2)
Overall ranking	2
JLA question ID	0056/2
Explanatory note	This question speaks to how to improve the current supports and services so that they are coordinated (across different service providers), that each person has access and there is a consistent level of support to meet the needs of individuals with neurodevelopmental disorders throughout their life. Traditionally, there have been more services and supports available in early years and not during difficult transitions to adulthood, thus there appears to be gaps in the system and it is not easy for individuals and families to get the resources and services what they need.
Evidence	Systematic review - Balogh R, McMorris CA, Lunsky Y, Ouellette-Kuntz H, Bourne L, Colantonio A, Gonçalves-Bradley DC. Organising healthcare services for persons with an intellectual disability. Cochrane Database of Systematic Reviews 2016, Issue 4. Art.No
Health Research Classification System category	Mental Health

Extra information provided by this PSP
Original uncertainty examples	How can services work together more effectively to support children and their families? ~ How can we better provide long term, coordinated care for these individuals across systems (such as schools, hospitals, private practices)? ~ How can we design a system of care that transitions from preschool to school and meets the child and family's needs across the lifespan (incorporating health education and social supports)? ~ How do we better organize service delivery such that families and clinicians have clear pathways for a given problem/disorder?
Submitted by	Mostly family members/carers, clinicians

Extra information provided by this PSP

Original uncertainty examples

How can services work together more effectively to support children and their families? ~ How can we better provide long term, coordinated care for these individuals across systems (such as schools, hospitals, private practices)? ~ How can we design a system of care that transitions from preschool to school and meets the child and family's needs across the lifespan (incorporating health education and social supports)? ~ How do we better organize service delivery such that families and clinicians have clear pathways for a given problem/disorder?

Submitted by

Mostly family members/carers, clinicians

PSP information
PSP unique ID	0056
PSP name	Neurodevelopmental Disorders (Canada)
Total number of uncertainties identified by this PSP.	63 (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop	28 September 2017