Resources for families and carers

Navigating the post-school transition process for families of a young person with developmental disabilities

Background

It is well recognised that the support received by families during a young person's transition to the post-secondary school world is inadequate. Families have frequently reported a lack of available information and transparency about the transition process for their young person. Studies demonstrate that transition planning, which aims to map out daily activities and supports beyond school, might also fail to take account of a young person's individual needs and aspirations, and often occurs too late in their school career to be effective. Consequently, navigating the transition process has been identified by families as one of the most stressful aspects of caring for a young person with developmental disabilities. 

In previous Observatory research, family carers have expressed a wish that there had been a resource available which they could have used as a guide to help them understand what to expect during this time in the young person's life.

The overarching aim of the project is to enhance family knowledge and confidence in navigating the post-secondary school transition for young people with learning and developmental disabilities. To achieve this, the project will:

1. Develop a self-help booklet available both online and in printable format.
2. Test the acceptability and feasibility of the booklet with families of young people with developmental disabilities.

By bringing together family carers and researchers, the project will ensure that the booklet is both practical and user-friendly. We also anticipate the project will raise awareness of the research conducted by the project team among family carers and relevant stakeholders. 

What we did

Phase I

The first phase of this project was the first step in addressing this unmet need through co-creating an online survey with a steering group, made up of parents of people with developmental disabilities and autism, young people who have been through the transition, and members of DIFFERabled Scotland. Through this survey we aimed to better understand the issues that parents experience during the transition process and identify the type of resource required to assist carers in the navigation of the post-secondary school transition process of their young person with developmental disabilities.

Phase II

We worked with the steering group to use the information from survey respondents to co-design an online resource to help families navigate the post-secondary school transition process.

While no such one-stop information resource currently exists for this population, findings from the questionnaire developed in phase one have helped identify the types of information and guidance that families would find most beneficial. This input has directly informed the development of the booklet which will be available in Spring 2025. 

 
This project is supported by Glasgow Knowledge Exchange funding.

Page updated: 3rd March 2025