ComPASS

Research

We gained insights into the primary needs and challenges of carers by conducting interviews with 2 carers, 5 professionals, 1 organisation, as well as engaging in multiple Facebook groups.

Children aged 5-11 and their carers seek autism assessments for various reasons

1. As a proof for requesting special education services, disability accommodations in the workplace, and government allowances.
2. It could also serve as a Guidance to provide a framework for schools, communities, or medical institutions to offer the specialised support that the child needs.

Pre-assessment support is described as important by carers, but has traditionally seldom been available

The entire assessment can take up to 4 years with 2-3 years dedicated to waiting for the autism assessment (which is the pre-assessment stage).

INSIGHTS

1.Navigating the medical system

After being referred for an assessment, autistic children are usually placed on a waiting list for more than 3 years. The prolonged waiting period leaves carers with uncertainty and frustration, as they have to search for support and answers within the complex medical system.

According to the national framework published by the NHS in April. They are working extraordinarily hard to keep pace with rising demand. Due to the demand-capacity gap, the ability to provide timely assessment and support for individuals is currently impossible. 

This situation can leave carers feeling a lack of agency as they are uncertain about the next steps to be taken by the autism assessment service, including when and how this will happen.  They struggle to navigate the complex assessment system on their own during this stage.

2.Advocating for necessary help at school

Children aged between 5-11 are experiencing the transition from home to school. It is the best time for early intervention which helps them develop the skills they need to live happily. So carers strive to communicate with the SENCO(which is Special Education Need coordinator) to ensure that the school comprehends their child's unique needs.  However the fact is that teachers are lacking knowledge about autism, and the support in school is dependent on an official diagnosis paper. 

Without an autism diagnosis, schools may delay or refuse to offer assistance.  This is primarily due to budget constraints in education, resulting in carers facing challenges when advocating for the help their child needs during the pre-assessment stage.

Service proposition

ComPASS is a comprehensive support platform that empowers carers, schools and health services to collaborate effectively and support children with special needs. 

We enhanced support through providing the following value:

• Navigation: Providing timely and quality information to reduce carers’ uncertainty about the process, to give them a sense of agency in the system.
• Communication: Streamlining communication between stakeholders to assist carers in advocating for their child's needs more easily and effectively.
• Synchronisation: Facilitating efficient and coordinated information sharing and resource access between carers, schools, and health services.

Impact

With ComPASS

• Carers can have increased confidence in navigating the system and advocating for their child.
• Children can have a greater chance for learning and progress, ultimately developing to their full potential.
• Schools can be empowered to provide effective support, ultimately leading to better outcomes for these students.
• Health service can improve work efficiency, speeding up the assessment process and bridging the demand-capacity gap.

Collectively, we gather information over an extended period of time to provide carers and autistic children with the necessary pre-assessment support. When the assessment comes, we are all ready to go.