524642 research-article2014
AUT0010.1177/1362361314524642Autism X(X)Pasco et al.
Special Issue Article
A training and development project to improve services and opportunities for social inclusion for children and young people with autism in Romania
Autism 1–5 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1362361314524642 aut.sagepub.com
Greg Pasco1, Bruce Clark2, Ioana Dragan3, Fidelie Kalambayi4, Vicky Slonims5, Adelaide Katerine Tarpan3 and Kerstin Wittemeyer6
Abstract In 2010, the Romanian Angel Appeal Foundation launched a 3-year national training and development programme to develop and deliver a model of diagnostic and therapeutic services aimed at promoting social inclusion for children and young people with autism spectrum disorders. The project adopted a number of strategies aimed at developing knowledge and skills among professionals and increasing awareness in political and public spheres: (a) a three-stage training programme designed to increase knowledge of autism spectrum disorders and promote best practice among professionals working in services providing for children with autism spectrum disorders and their families, on a nationwide basis; (b) two online courses for general practitioners and psychiatrists, with content relating to the identification, diagnosis and treatment of autism spectrum disorders; (c) a total of 40 counselling and assistance centres for people with autism spectrum disorders were launched in partnership with local authorities; (d) a national strategy for social and professional integration of people with autism spectrum disorders developed through consultation with political, statutory and voluntary sector partners; and (d) a nationwide media campaign to raise awareness of the needs of children and young people with autism spectrum disorders that reached over eight million people. The project provides a transferable model to achieve important improvements in the quantity and quality of services on a national level within a brief time frame. Keywords autism spectrum disorder, awareness raising, computer-based training, low- and middle-income countries, national campaign, Romania, training and development
Introduction Awareness and knowledge of autism are increasing across the world (Elsabbagh et al., 2012), and recognition of the need for early diagnosis and improved provision for children and adults with autism spectrum disorders (ASDs) is established in many low- and middle-income countries. However, professional expertise and infrastructure often lag behind, and strategies to implement positive change on a national level may appear unachievable or unaffordable (Khan et al., 2012). The Romanian Angel Appeal Foundation (RAA) is a non-governmental organisation established in 1991, with experience of working with children with special needs, including those with physical disabilities, HIV/AIDS and autism. This work has involved implementing nationwide programmes in partnership with local, regional and governmental organisations;
professional bodies; and voluntary sector organisations. Since 2008, RAA has been involved in initiatives relating to autism. Between November 2008 and May 2009, RAA
1Institute
of Psychiatry, King’s College London, UK London and Maudsley NHS Foundation Trust, UK 3Romanian Angel Appeal Foundation, Romania 4University of Bucharest, Romania 5King’s College London, UK 6University of Birmingham, UK 2South
Corresponding author: Greg Pasco, Institute of Psychiatry, King’s College London, De Crespigny Park, London SE5 8AF, UK. Email:
[email protected]
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coordinated the Together We Defeat Autism campaign, which identified the increasing number of children diagnosed with autism in Romania, and the need for increased and improved services for young people with ASDs and their families, including better and earlier diagnostic services and autism-specific training for professionals. In particular, the need for a coordinated national strategy to promote opportunities for social inclusion for children and young people with autism was identified. In conjunction with the Romanian Ministry of Labour, Family, Social Protection and Elderly People and the Romanian Association of Cognitive and Behavioural Psychotherapy, RAA secured funding from the European Social Fund (ESF) for the They Must Have a Chance Too! project (RAA, 2013), with the broad aim of increasing opportunities for social inclusion and future access to the labour market for children and young people with autism via access to improved diagnostic services and greater access to specialist intervention programmes and services. The project was funded for the period from October 2010 to September 2013, with a total budget of approximately €2.5m, of which €2.3m was provided by ESF.
Method The project consisted of five components: (a) a three-stage training programme for professionals working with children and young people with ASDs; (b) an Internet-based course for general practitioners (GPs) and psychiatrists; (c) the establishment of 40 counselling and assistance centres for people with ASDs; (d) the development of a nationwide strategy for social and professional integration of people with ASDs; and (e) a national media campaign to raise awareness of the needs of children and young people with ASDs. These components are described in detail below.
Training programme for professionals A three-stage training and professional development programme was designed with the aim of having an immediate and significant impact on the quality of services delivered on a nationwide basis. Five professional consultants, based in the United Kingdom, with expertise in service provision and research relating to people with autism, were recruited to assist in the development and delivery of the training curriculum. These consultants each had between 15 and 25 years of experience relating to autism and related conditions, in a range of settings including speech and language therapy, psychiatry, psychology, research, education and professional training. Eight Romanian consultants, with an average of 10 years of experience of autism and related conditions in a range of settings including child psychiatry, psychotherapy, speech and language therapy, clinical psychology, professional
training and applied behavioural analysis (ABA) were also involved in developing and delivering the training curriculum. The first stage of the training programme comprised two 3-day courses for experienced psychologists who would subsequently provide support and advice to professionals trained in the second stage. The content of these courses covered autism theory, research and evidencebased practice, as well as guidance and techniques relating to the provision of support and supervision. The second stage of the training programme involved six 6-day courses for professionals, including psychology, speech and language therapy and educational practitioners, working with children and young people with ASDs. The curriculum for these courses involved a balance of theory and evidence-based research findings, practical problem solving, training in ABA techniques and a general presentation of the Picture Exchange Communication System (PECS; Frost and Bondy, 2002). An outline of the content of these courses is presented in Table 1. The curriculum was developed and delivered by the UK-based consultants in conjunction with colleagues from Romania, taking local context into account. Each trainee completed a pre- and post-course questionnaire, relating to topics covered on the course, in order to measure change in basic knowledge. The final stage of the training programme involved the implementation of skills and knowledge gained by the trainees who attended the courses described above. Evaluation of this stage involved 30 h of supervised practice by the experienced psychologists trained in stage 1, or through the presentation of detailed case studies of two individuals with ASDs. The outcomes of these supervised evaluations were collected centrally via a secured web platform administered by RAA (Kalambayi, 2013a).
Internet-based courses for medical professionals Two online courses, certified by the Romanian College of Physicians, with content relating to identification, diagnosis and treatment of ASDs, were developed and published on http://www.tsa.medability.ro. The courses were addressed to the needs of GPs, paediatricians and psychiatrists and provided up-to-date information on ASD, its clinical signs, diagnostic methods and treatment. The courses were developed in partnership with the University of Medicine and Pharmacy Gr T Popa Iaşi. On completion of the e-learning modules, professionals received credit towards their continuing professional development (Kalambayi, 2013b).
Treatment centres for people with ASDs A total of 40 counselling and assistance centres for people with ASDs have been launched in locations around Romania in partnership with local child protection authorities. All
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Pasco et al. Table 1. Content of curriculum taught in stage 2 of training programme. 1. Introduction to autism 2. Diagnosing autism 3. Assessment and management of co-morbidities of autism 4. Learning and education assessments 5. Early intervention for children with autism 6. School-based provision – mainstream and special schools 7. Social skills interventions 8. Defining the evidence base 9. Case studies – interactive exercise 10. Description of applied behavioural analysis principles 11. Learning methods 12. Methods of collecting data 13. Techniques of behaviour shaping 14. Intervention plans 15. Management of 1:1 session 16. Generalising and maintaining 17. General presentation of Pyramid Approach to Education and Picture Exchange Communication
centres were refurbished and equipped with appropriate assessment and intervention materials and resources, and staffed with a minimum of two specialist professionals – a total of 175 psychologists and educators (30 full-time and 145 part-time). Services provided in the centres consist of assessment of the child’s cognitive skills, sociocommunicative functioning, play and daily living skills, identifying challenging behaviours or sensory sensitivities; developing individualised intervention plans and individual interventions addressing the child’s low-functioning skills and managing problem behaviours; monitoring the child’s progress over time; and counselling for families.
National strategy for social and professional integration of people with ASDs A nationwide strategy for social and professional integration of people with ASDs was developed through consultation with political, statutory and voluntary sector partners. The consultation process took place between June and November 2011 and aimed to develop an appropriate framework for implementation and monitoring, at national level, of concrete measures to ensure the rights of people with autism in fields such as health, education, social integration and employment (Kalambayi, 2011).
Media campaign A 1-year nationwide media campaign, called Give Me a Chance! was developed in order to raise awareness of the needs of children and young people. The campaign was launched in September 2011 and had three main objectives:
1. Information and raising awareness in schools – for teachers, pupils and parents in preschool and school settings 2. Information about autism for the general public, especially focussed on the needs of young parents and grandparents 3. Advocacy for the National Strategy for the social integration of people with autism – aimed at members of the Romanian Parliament and Government, representatives of public authorities and other stakeholders The Give Me a Chance! media campaign comprised one television spot; three audio spots; 10 press releases; 16,000 posters; 30,000 flyers for schools and parents; eight 25-min radio interviews with autism professionals broadcast on Radio Itsy-Bitsy (a radio station for parents and children); and six public events.
Results Training programme for professionals A total of 96 experienced professionals attended one of the two initial 3-day courses in Bucharest or Cluj (July 2011). To date, 62 (65%) of these professionals have fully completed the post-course requirements. A pre- and posttraining test containing 30 multiple-choice questions was filled out by the course participants, assessing their knowledge related to ASD. A comparison of the scores (computed as summative scales) indicated a statistically significant difference between the mean pretest (17.5) and post-test (20.5) scores (t = −6.829, df = 187, p < 0.05). A total of 588 practitioners (95 of those who attended one of the earlier events plus 493 others) attended one of the six 6-day courses in Bucharest (August and December 2011, January 2012), Cluj (September 2011), Iaşi (October 2011) or Timişoara (November 2011). According to a baseline evaluation survey completed by the participants (N = 554, 94%), during the first day of the course, 38% had at least a masters’ degree in psychology or a related field, and 57% had never attended an ASD-related training event. Nevertheless, 50% indicated ‘evaluation’ as the intervention they use while working with people with ASDs, and only 23% reported not to be using any ASDspecific instruments/materials in their work. Those who had some previous training experiences reported that the content of this training related to ‘basic notions about ASD’ (26%), ‘ABA’ (10%) and ‘PECS’ (3%). The most commonly used ASD-specific instruments were reported to be ‘ABA’ (12%), ‘Portage’ (12%) and ‘Childhood Autism Rating Scale (CARS)’ (8%). An ASD-related knowledge assessment was conducted among participants, before and after the training. The test contained a section with 16 open-format questions and one with 16 multiple-choice
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questions. The mean pre- and post-test scores for the multiple-choice section were 6.9 and 11.0, respectively – a statistically significant difference (t = −23.459, df = 957, p < 0.05). By the end of the practice period, 329 of the 493 practitioners (67%) who attended only one of the 6-day courses had fully completed the post-course requirements: 735 cases were discussed through more than 3000 documents submitted via the web-based server, including personalised intervention plans and videos of therapy sessions. Overall, 391 out of all 588 participants (66%) took part in the post-course monitoring of the implementation phase of the project. An anonymous online follow-up assessment was performed 6 months after the practice period ended, with 251 responses (43%) from all the participants who attended the training events. In all, 52% of the respondents reported that they worked within the public sector, 14% in private services and 34% in both. Almost all of the respondents (94%) reported that they were using the skills and concepts acquired during the training in their current practice, and 76% considered that attending the training improved their overall professional performance. The three most highly evaluated factors from the three-stage training process were ‘the theoretical information’ (83%), the ‘working with actual ASD cases during the training practice’ (73%) and ‘the feedback from the supervisor during practice’ (65%).
Internet-based courses for medical professionals Since September 2011, 1474 GPs and psychiatrists have registered on the e-learning platform, and 613 doctors have received certification following completion of the two courses (one introductory course, and the other on ASD diagnosis and screening). According to an online survey conducted at the end of 2012 among course graduates (N = 118), 51% of respondents reported that they had already implemented some of the knowledge gained in their clinical practice, mainly those related to identifying signs of ASDs in children. The majority of respondents were appreciative of the quality, quantity and utility of the information delivered through both online courses. On the other hand, 17% of respondents had not yet had any clinical involvement with a person with ASD following completion of their online training.
Treatment centres for people with ASDs County-level campaigns promoting the new centres have been implemented by RAA, targeting families affected by ASD as well as the general public. The campaigns incorporated radio broadcasts, flyers advertising the services and a ‘How-To’ guide for families affected by ASD. By the
end of May 2013, after 13 months of activity, the 40 centres had been accessed by 1005 people with ASDs who received a combined total of 40,302 intervention components (e.g. assessment, intervention or counselling). Those with ASDs were mostly male (73%), aged 10 years or younger (74%) and living in urban areas (70%). More than one-third of children were preschoolers (aged 6 years or younger), suggesting that the centres had succeeded in reaching the main intended target client group – children who could benefit from early diagnosis and intervention. A further assessment of the project, incorporating a qualitative methodology, is ongoing and is investigating the relevance, efficiency, efficacy, sustainability and perceived impact of the services provided across the 40 centres.
National strategy for social and professional integration of people with ASDs A total of 36 representatives of political, public and nongovernmental organisations attended one of six consultation workshops. Among the organisations represented were the Romanian Ministries of Work, Education and Health; the Directorate of Child Protection; the Romanian College of Physicians; the Romanian College of Social Assistants; the University of Medicine Carol Davila – Bucharest; the University of Medicine Victor Babes – Timişoara; the Child and Adolescent Psychiatry Clinic of the Prof. Dr Alexandru Obregia Hospital; the RAA; the We Defeat Autism Association; and the Romanian Autism Association. As part of the Federation for Rights and Resources for People with Autism (FEDRA), RAA contributed to legislation amending Law 151 for integrated services for people with ASDs. In April 2013, RAA was also involved along with FEDRA in the organisation of the first Advocacy Conference, which took place at the Parliament Palace in Bucharest. This conference explored models of success in implementing integrated services for people with ASDs from early intervention to social and professional integration.
Media campaign According to the Spoon media agency report, November 2012 (http://www.spoon.ro), the Give Me a Chance! campaign reached the following: •• 5,338,000 people via television spot broadcasting •• 124,620 people via audio spot broadcasting •• 2,005,880 people via the press release campaign (six public events, three television events, over 250 articles in written media and on the Internet) •• 15,000 school teachers and parents via poster distribution
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Pasco et al. •• 30,000 young parents and grandparents via flyer distribution •• 360,000 people via online banner broadcasting •• 280,000 people via social media and online campaigns Overall, the Give Me a Chance! campaign was estimated to have reached 8.15 million people.
Conclusion The They Must Have A Chance Too! project provides a transferable model for low- and middle-income countries to achieve a significant impact on the quantity and quality of diagnostic and therapeutic services on a national level within a relatively brief time frame. The implementation of the project goals has been confronted by a number of challenges, including political opposition to adopting the National Strategy, local partners’ financial and human resource constraints and an unwillingness of some medical professionals to increase their knowledge of autism. However, these challenges have proved not to be insurmountable. One of the main strengths of the project was that it contained multiple components. Although the three-stage training programme for professionals was the cornerstone of the project, this was supported by complementary activities, in particular, the establishment of new centres to provide assessment and intervention services for people with ASDs and their families, and the provision of opportunities for professional development for key medical professionals involved in the identification and diagnosis of autism. Vital to ensuring that improvements in services will be maintained beyond the life of the project itself is the need to secure political and legislative support, especially when services have been developed in partnership with local authorities who are dealing with human and budgetary constraints. In this regard, the project can be seen to have been particularly successful, through initiatives to bring together representatives of key statutory, voluntary and professional organisations to develop sustainable nationwide strategies and policies. Finally, media campaigns aimed both at key stakeholders and the public in general can have a far-reaching impact on the level of knowledge of autism and attitudes towards children and adults with ASDs and their families. In this respect, the project can be seen as having been enormously successful, reaching approximately one-third of the population of Romania through its media campaign. Limitations of this report include the fact that we are not yet in a position to describe the individuals with ASDs and their families who have accessed services in any detail, nor evaluate directly the impact of any intervention or
services received in a systematic way. As yet we have not completed our investigations into the perceived impact of the intervention provided through the new centres from the perspective of the service users. We are also unable to provide a detailed breakdown of the costings for different aspects of the project budget. In summary, as a result of the They Must Have a Chance Too! Project, knowledge and practical experience among specialist professionals working with children and young people with ASDs have been enhanced and access to appropriate services for children and young people with ASDs has been increased. Additionally, levels of knowledge and awareness among policymakers and the wider public have also been raised via the project. Such changes in the perception of the needs of people with autism will undoubtedly lead to increased opportunities for social and workplace inclusion for people with ASDs. Parents and families of people with autism are often the strongest advocates for people with ASDs themselves, and coordinated initiatives through local, regional and national associations, which have gained added respect and authority as a result of this project, will be key to consolidating the benefits that have so far been achieved. Funding This work was supported by the European Social Fund, Sectorial Operational Programme Human Resources Development 2007– 2019, Priority area 6 ‘Promoting Social Inclusion’, Key Area of Intervention 6.2.: ‘Improving the access and participation for vulnerable groups on the labour market’.
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