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Project

Description of Action

The COST Action “advancing Social Inclusion through Technology and Empowerment (a-STEP) will build an interdisciplinary, intersectoral pan-European and beyond, network which will enhance social inclusion and empowerment of individuals with Autism Spectrum Disorder (ASD) and/or Intellectual Disability (ID).

Social Inclusion is an important element of well-being for people with ASD and/or ID. Research has highlighted that social inclusion is facilitated through access to education and employment. Despite this, people with ASD and/or ID have low rates of participation in these domains. Research has also shown that Assistive Technology (AT) shows great promise in increasing participation in education and employment.

This Action will bring stakeholders from research, industry, policymakers, service providers and individuals with ASD and/or ID together to exchange current technological, research and policy developments. Stakeholders will identify the challenges of translating research and products into practice and generate strategies to support the development and uptake of new AT. The inclusion of policymakers will be critical as it will allow the Action to promote the deployment and uptake of AT more widely across EU countries and include AT as a policy priority. Thus, there is an urgent need to bring together an interdisciplinary and multisectoral Action to identify and share best practices in order to refine the methods for designing and developing AT tools and accelerating AT uptake and to reduce abandonment issues.

a-STEP will achieve the following:

Evaluating the development of novel AT by providing an inerdisciplinary and intersectoral collaboration between all stakeholders a-using a translational approach to establish standardised practice guidelines for design, development and deployment of AT.
Creating knowledge, b providing a database of current AT technologies and their match to employment and educational contexts for users with ASD and/or ID.
Promoting the adoption of evience-based guidelines inrelation to use of AT across settings and populations and propogating the use of inclusive design and rigorous research approaches.

Background

The European Commission’s European Disability Strategy 2010-2020 has identified social exclusion as one of the grand challenges that individuals with disabilities in Europe are facing . The challenge is even more profound for individuals with Autism Spectrum Disorder (ASD) and/or Intellectual Disability (ID). ASD is a life-long neurodevelopmental condition characterised by social and communication impairments, restricted interests and repetitive behaviours. ASD symptoms may range from mild to severe. Some individuals may have strong language and intellectual abilities while others may not be verbal and may require lifelong care. ID is characterized by significant limitations in both intellectual functioning and adaptive behaviour and the diagnosis can range from mild to moderate to severe levels of impairment. ASD can be diagnosed with or without ID and ID can also be diagnosed alone. ASD and/or ID are global societal challenges. Estimates of ASD prevalence globally have increased from 55 million in 2005 to 62.5 million in 2017. The incidence of ID has grown from 100 million in 2005 to 100.6 million in 2017. According to ESIPP, 7.5 million people in the EU are living with ASD and 15 million have an ID. In the UK, where 600,000 people have been diagnosed with ASD, the condition represents £32 billion per year in treatment, lost earnings, care and support for children and adults on the spectrum. The compound effect of the very large lifetime cost and rising prevalence presents an enormous burden to individuals, families, healthcare and social care systems.

Approaches to Education and Employment

Approaches to Education and Employment: Several intervention approaches have been developed and adopted to enhance participation in education for children with ASD and/or ID such as Applied Behaviour Analysis, TEACCH and the Eclectic approach. No one approach has been found to be effective, limitations have included the use of single-subject designs, small sample sizes, the paucity of randomized control trials and the lack of generalisation from research to educational settings16. In employment, individuals with ASD and/or ID often require ongoing training and assistance. Interventions such as supported employment programs and/or job coaches. have been developed. Continued dependency on others such as job coaches can limit their effectiveness and sustainability.

Assistive Technology (AT)

During the past decade, several systematic reviews have demonstrated AT show great promise in increasing participation in education and employment. AT are products, equipment, and systems that enhance learning, working and daily living for persons with disabilities.

AT holds many advantages

Individuals with ASD and/or ID are visual learners, AT uses visually cued instructions abundantly;

AT can be adjusted to suit the cognitive level of the individual, hence optimising the learning environment;

AT can be used to create a controlled environment where the real-world situation can be simulated;

AT can create a safe and controlled learning environment which reduces anxiety;

the consistency of clearly defined tasks can decrease distraction and increase attention

Low uptake of AT

AT has high abandonment rates of 20-30% which negates the potential of AT for increasing social inclusion. Another issue is the current lack of individualized AT assessment prior to the selection of AT devices. Research indicates that user’s feelings about the AT and the support of family, peers, and teachers are critical factors that can determine successful use versus abandonment. Despite the benefits of AT in the scientific literature, AT is not being adopted by educators, employers, and policymakers.

This could be due to several reasons:

People with ASD and/or ID are often omitted from the research process;

The lack of collaboration between end-users, researchers and developers;

There is a lack of policy options to present to policymakers, which clearly explains the lack of a policy foundation for assistive technologies, and by extension they become low priority and lack a policy support platform at EU level and in the EU member states.

These issues make the translation of prototype conceptualization in laboratories to actual implementation in the community more challenging. The evidence of state-of-the-art in AT is scattered and diverse. While a large number of AT products are available, research is required to investigate which are effective and evidence-based. The majority of studies are limited to small sample sizes and case studies. While studies do report positive effects, it is difficult to generalize from a limited number of participants to the entire population.