Hong Kong Journal of Paediatrics [HK J Paediatr (New Series) 2008;13:196-202]

President, Hong Kong Society of Child Neurology and Developmental Paediatrics (HKCDP); Chairman, Working Party on SLD, HKCNDP, Hong Kong, China

CW Chan (陳作耘)

The condition of Specific Learning Disabilities (SLD) is basically a child health issue requiring the close cooperation and collaboration of medical, social and educational professionals working in a transdisciplinary team. For many years, numerous Hong Kong children and parents suffer unnecessarily from these disabilities due to poor awareness and professional support. Local research work recently confirms that the prevalence rate of SLD in Hong Kong children is comparable to the international data and that the incidence of Dyslexia is about 10% of the population. Numerous workshops and seminars have been held locally and keenly supported by professionals, parents, politicians, educators and administrators through the years. Consensus on definition and multidisciplinary interventions has been reached with the goal of formulating comprehensive management programme for children with SLD. This paper reviews the evolution of SLD in Hong Kong in the past ten years as well as major breakthroughs in recent developments in the practice of SLD. The admission of SLD into the Rehabilitation Programme Plan 2007 is a monumental milestone whereby SLD is officially recognised as a member of the Disability Category which also entitles individuals with SLD to have access to remediation, compensation, accommodation and resource support from the Hong Kong SAR Government at the family, school and community levels. These are key factors for success in habilitation. The SLD Summit 2007 hosted in Hong Kong in November 2007 summarises the most up-to-date progress, consolidates the consensus on SLD for Hong Kong and endeavours to highlight the way forward and action plans for the future.

Keyword : Advocacy; Chinese Language; Dyslexia; Hong Kong; Specific Learning Disabilities

Introduction

The term Specific Learning Disabilities (SLD) / Dyslexia may not be familiar to many people but it has brought great challenges to families and to children who have suffered from the condition. Despite the fact that it has been described in the western literature for over a century, misunderstandings of the etiology and management strategies still exist. For many years, dyslexia is considered as an aberrant psycho-educational development but now it is realised to be a genetic, biologic, neurologic and bio-social problem. It is caused by a variety of neurocortical deficits and areas of neurologic dysfunction but some of the exact mechanisms have yet to be completely elucidated. Dyslexia can be identified as distinctive patterns of difficulties in relating to the processing of print information within a continuum from very mild to extremely severe, which results in restrictions in literacy development and discrepancies in performance within the curriculum. SLD is sometimes described as a "variable syndrome" in which a number of qualitatively different types of disabilities exist and thus causes confusions to most people. The major types consist of (1) Developmental Dyslexia (Dyslexia); (2) Specific Language Impairment (SLI); (3) Specific Learning Disability in Mathematics (Math-LD); (4) Developmental Coordination Disorders (DCD).

The modern concept of child health should cover medical, social and educational domains. This is particularly applicable to conditions that affect multiple domains like SLD. There is growing evidence to suggest the need for complex and transdisciplinary interventions for children with SLD. With advancement in our understanding of the neurobiological bases, clinical features and evidence supported interventions for developmental dyslexia, it is imperative that services for and interests in affected individuals are informed accordingly. In order to achieve these, we need to have alignment of definitions among professionals, accurate identification and diagnosis through validated screening and assessment tools and the work of integrated multidisciplinary teams, as well as accountable management plans. In line with these, there must be parents who understand their children's condition and needs, school teachers who have appropriate preparation and ongoing in-service training, enlightened education administrators, as well as widespread public awareness and acceptance of the disabilities. Adverse complications associated with undiagnosed or improperly managed children with dyslexia include school failure and drop-out, eroded self esteem, juvenile delinquency, substance abuse, and future lives of unemployment and underachievement. Effective legislation and government policies, plus close partnerships among professionals, stakeholders and the public are foundations for success.

In this review, we will examine the evolution of SLD in Hong Kong, starting from initial public awareness, formal recognition by the government and society to serial advocacy work done and recent formulation of comprehensive management programme for children with SLD.

Evolution of Specific Learning Disabilities in Hong Kong

The condition of Special Learning Disabilities (SLD) is well known in the western world for more than a century. In the past, people presumed that it only existed in western languages. Even up to a decade or so ago, education experts and other professionals did not believe in the existence of SLD in the Chinese language which was considered to be a graphic symbol system different from the phonemically-based alphabetical ones.

Through the years, there were no accurate local statistics based on agreed definition and methods available for SLD in Hong Kong. This was mainly due to poor awareness of the scientific progress on SLD and lack of coordination among professionals. Other obstacles in recognising SLD in the Chinese population were the plethora of interventions and fear of labeling and stigmatisation. This lack of unified definitions, local data and cooperation among professionals further delays the development on SLD interventions in Hong Kong.

1) Early Work Done on SLD by the Hong Kong Society of Child Neurology and Development Paediatrics

In 1996, the Hong Kong Society of Child Neurology and Developmental Paediatrics (HKCNDP) hosted a meeting on SLD at Queen Elizabeth Hospital with speakers from medical, psychological and special education sectors. The meeting was well attended by professionals who were convinced of the presence of such problems in our community and agreed that something had to be done. A working party on SLD was then formed. Its mission was to provide a platform for academics, practitioners, advocates and professionals to work together in driving the development of SLD in Hong Kong. The working party composed of multidisciplinary groups including medical clinicians, clinical psychologists, occupational therapists, physiotherapists, educational psychologists and teachers of special education. The initial goals focused on planning of scientific activities and research, coordinating activities amongst professionals from multiple fields working for children and adults with SLD and compiling a position paper with agreed definition of SLD among professionals.

A number of scientific meetings had been organised to share practice and research evidence on SLD subsequently. In November 1998, a meeting was hosted by the HKCNDP - "SLD: Setting the Scene in Hong Kong" which signified a big milestone in the development of SLD in Hong Kong. Professionals from developmental paediatrics and education psychology reviewed the existing situation in Hong Kong, addressed the subject conceptually and conveyed the message clearly and forcefully that something needed to be done without further delay. After careful and earnest discussions at the meeting, professionals from over ten disciplines working in this field agreed unanimously on the following:

2. SLD comprises a heterogeneous group of conditions and that unified definitions are mandatory for meaningful study and management;

3. Education rights of children with SLD (as stated by the WHO Declaration of Children's Rights) have to be addressed and respected;

4. A multi-disciplinary working party should be established to tackle the problems in a comprehensive manner; and

5. In view of the urgency of the problem in Hong Kong, the approach to this problem should sequentially include immediate measures, long-term objectives and the setting up of policies for future practice.

Following this fundamental scientific meeting were other important meetings organised in the coming year - "SLD from Multidisciplinary Perspectives: From Theory to Practice 1999" and "SLD: The Way Ahead 1999" which was a continuation of the previous activities.^1-4 Two world experts on the subject, Dr. Drake Duane (neurologist) and Professor Che-Kan Leong (psychologist-cum-special educator) were invited to address the audience at the Plenary Session on "Overview of the State of Practice and Research in SLD". It successfully set the scene on the subject and aroused public awareness on the importance of early detection and intervention.

The international experience on SLD has inspired the local development on SLD services. Throughout the years, a number of world experts had come to share the up-to-date developments in the field. Among these were Professor Che-Kan Leong of the University of Saskatchewan, Canada, who was the world's respectable expert in Chinese reading disabilities, visiting in 1995; Professor Drake Duane of Arizona State University, USA, who was the leading member of international research groups on reading disabilities, in 1997; and Professor Albert Galaburda of Harvard Medical School, who had discovered cortical aberrations in the dyslexic brain, in 1999. The international experts contributed significantly in promoting the SLD development. An International Conference on SLD for children from the Chinese speaking regions was held in Princess Margaret Hospital on 26th October 2002. The conference attracted experts from Beijing, Taiwan, Singapore, USA and Canada. A press conference was held after the conference giving out the message to all health professionals and government officials in Hong Kong: "Specific Learning Disabilities or Dyslexias do exist in the Chinese Language and the mechanism has some common basis with the alphabetical language system such as English".^5,6

All these meetings contributed to the successful accomplishment of initial targets in arousing professional awareness, aligning an agreed definition on SLD, drafting strategic plans to combat the problems and launching advocacy work on SLD. A position paper on SLD was made in July 2005 by all professionals in Hong Kong with local data for understanding, planning, on field management and advocacy.⁷

It is well documented in the research work done by Professor Connie Ho of the University of Hong Kong and her colleagues⁸ that the local prevalence rate of Dyslexia in Hong Kong children is about 10% which is comparable to rates from international data. As mentioned before, the development of SLD in Hong Kong has gone through a long path before it is better recognised by the public nowadays. In order to allow professionals to acquaint themselves with the diagnosis and management of the various members of SLD, the HKCNDP Working Party decided to launch services strategically in slow pace to allow steady progress in implementation: "Slow and steady wins the Race"! The sequence of implementation of different SLD in HK was thus effected in the following sequence: Developmental Dyslexia (Dyslexia) in 1996; Developmental Coordination Disorders (DCD) in 2003; Specific Language Impairment (SLI) in 2006 and Specific Learning Disability in Mathematics (Math-LD) in 2007. These were all accomplished with good acceptance by the professionals and by the general public.

Essential Driving Forces in Previous SLD Development in Hong Kong

With the help of the evolution process and increasing awareness of SLD in the society in Hong Kong, there is considerable development in terms of understanding the condition, diagnosis and intervention that may ameliorate the condition. Assessment tools are also developed to help teachers to identify children's strengths and weaknesses in learning. These assessments may unveil some explanations for the children's difficulties in learning and look for patterns of difficulties. All the progress relies on the establishment of good partnership, involvement of devoted local and international experts and progressive training provided to professionals and educators in the field.

While it is well appreciated that children with dyslexia by the very nature of their disabilities will encounter problems in daily learning, it will be essential and important for the society to provide necessary supportive structure, better understanding and empathy towards this disadvantaged group. However, nothing can be done without good partnership and extensive collaborations. The Department of Health, the Education Bureau, the parent group Association for SLD (ASLD), community groups such as Pathways Foundation and FOCUS, and a number of NGO's like Heep Hong Club, the Hong Kong Christian Service, the Boys' and Girls' Clubs Association and Watchdog form an extensive network of good partnership with the HKCNDP Working Party in developing comprehensive services for SLD children.

With the good alignment among professionals, some activities for SLD were started locally. A Subspecialty Group on SLD was set up under the Child Assessment Service (CAS) of the Department of Health, Hong Kong Government to study the problem within their service. A Working Group was formed between the Special Education Section of the Education Department and CAS in an attempt to arrive at professional consensus and congruent management practices for children with SLD in Hong Kong. The Hong Kong Association for SLD (HKASLD), a potent parent group, was established in 1998 as a self-help organisation with support from various individual professionals, while charitable organisations such as the Pathways Foundation have pioneered services for children with SLD, which may eventually become prototypes for application at mainstream schools. These community groups help to provide mutual support to SLD children, parents and families.

The primary ground work on the development of SLD in Hong Kong was on education and coordination of local professional. Professor Che-Kan Leong from Canada was one of the early researchers in this aspect.⁹ He helped in establishing the consensus definition and first local conference on SLD. Local research data from the Child Assessment Service of DH coordinated by Dr Catherine Lam¹⁰ and from the Hong Kong University by Professor Connie Ho were the first available local evidence⁸ in leading subsequent development of SLD. Other contributors included Mrs. Betty Ip, Ms Becky Chiu, Ms Lee Suk Han, Ms Anna Wu, Dr. Ferrick Chu, Ms May Chan, Ms Iris Keung, Mrs. Chan Cheuk Wai Man and many others. Legislators including the Honourable Leung Yiu Chung, Ho Chun Yan, Cheung Man Kwong and Cheung Chiu Hung as well as public notaries such as Mr. Lo Koon Ting are to be commended for their immense support and contributions in advocating for the rights and welfare for our children with SLD. The joint efforts from these dedicated professionals have definitely driven the momentum forward and lay the solid foundations for subsequent development of SLD services in Hong Kong.

Many local research projects were supported by charitable donations like Hong Kong Jockey Club Charitable Foundation and Quality Education Fund (QEF) from government funding. A couple of local publications on SLD were found in various journals for professional and public educations. They also served as historical documentation on the progress of SLD development in Hong Kong.

5. Brainchild (Official Publication of HKCNDP) Vol. 5 No. 3 on "Advocacy Issues in Dyslexia in Hong Kong";

6. Hong Kong Journal of Paediatrics (new series) 2nd April 2005 Issue on "Advocacy Issues for SLD in Regional Areas: Hong Kong Experience"; and

As described earlier, the management of SLD must involve multi-disciplines. The role of educators should not be underplayed. Children with SLD require specific individualised intervention strategies including some form of remedial and accommodative interventions. During elementary and early school years, remedial instructions like phonemic awareness, vocabulary and comprehension play a key role in the management. During later education process, the strategy shifts from remediation to accommodations, such as allowing more reading time and allowing the use of hand-held computer devices, laptops, tape recorders, and recorded books to overcome the difficulties encountered in the learning process in SLD children.

A number of teacher workshops and seminars organised by the HKCNDP and Equal Opportunity Commission (EOC) have been launched throughout the past decade, aiming at better facilitation of interventions at school. Teacher Training Certificate Courses launched by the HKCNDP, the Hong Kong Paediatric Society (HKPS) and the Federation of Medical Societies of Hong Kong were popular among educators. Special Education Needs (SEN) Courses for school headmasters and senior teachers were jointly organised by the HKCNDP and the then EMB in 2003. Lectures at teacher training tertiary education institutes (HKIEd) were another format of training to equip new teacher trainees in dealing with SLD students. "READ & WRITE Project" sponsored by the Hong Kong Jockey Club Charitable Foundation aims at training 5,000 Chinese language teachers in primary schools. There were also transdisciplinary seminars for all professionals who were interested in this special subject. These teaching courses offer some theoretical insights and practical assistance to teachers and frontline workers who work daily with children with SLD in the classroom. By helping teachers to gain more insights into and knowledge of SLD, it is hoped that the dyslexic children and adults will feel more confident in dealing with their learning difficulties and fulfill their desire in learning.

Major Breakthroughs Throughout the Past Ten Years

Disability Discrimination Ordinance under the Equal Opportunity Commission was passed in 1995 as the local legislation to prevent discrimination against people with disabilities. It is encouraging to witness the Code of Education under DDO included SLD as a member of the categories of disabilities in 2001. This is an important step at policy level for our subsequent work in the area. The other important mandate for our work consists of the UN Convention on the Rights of the Child (1989) and Convention on the Rights of Persons with Disabilities (2006) in protecting children with special needs. These create foundation for our work on SLD in Hong Kong.

The contemplated legal action of parents against the SAR Government in 2003 was another major step in pushing the government to face the under-recognised problems of SLD. This was further highlighted by the Ombudsman's direct investigation on assessment of children with SLD in Hong Kong in 2006 and the investigation of SLD services in 2007. The admission of SLD as a member of Rehabilitation Programme Plan (RPP) 2007 was a major breakthrough success in the development of SLD in Hong Kong. With this official acknowledgement of SLD into the RPP, the children with SLD are entitled to receive rehabilitation services eligible for disabled people such as pre-school training and vocational rehabilitation.

Early identification and intervention are the key elements for successful management of SLD. Early assessment of SLD children serves the purpose of gaining understanding of the children and the individual educational context in order to make informed decision on subsequent interventions. It must involve the SLD children, parents, teachers and other relevant professionals. School-home collaboration is also important both for accurate assessment and successful intervention. The then Education and Manpower Bureau (EMB) published SLD teaching, support and assessment guidelines to primary schools in 2002-2004, which has proven to be very useful assessment tools. A new teacher assessment tool for secondary students has been developed in 2007 to identify adolescents with learning difficulties in Chinese who have not been picked up in their childhood stage.¹¹

The law provides protection for children with SLD from inappropriate discrimination. Educational systems, on the other hand, must provide special accommodation and effective training opportunities to them. Hong Kong Examination and Assessment Authority provided public examination accommodations for SLD students in 2003. Regarding optimal training environment, nothing will be better than creating a suitable school infrastructure with whole school approach to promote an inclusive culture, to set clear school policy and to establish practices to cater for the diverse needs of SLD children and to facilitate them in developing their full potentials. The Education Bureau also plans to implement "Integrated Education Programme" in future school system. It is important to develop scientifically-based practices and interventions and to set up accommodation standards.

The SLD Summit 2007 marked another significant developmental stage of SLD in Hong Kong.¹² The Summit was organised with the goal to review work achievement on SLD/Dyslexia over the past ten years in Hong Kong, to study current situations, to identify confronting challenges in management, to collect opinions from stakeholders, and to plan the way ahead with strategic recommendations. Two world experts on the subject - Professor Doris Johnson from Chicago and Professor Che-Kan Leong from Canada, were invited as keynote speakers. Together with other local experts and stakeholders on the subject comprising Legislators and Policy Makers, Bureau Heads and Government Officials, Academicians (tertiary Institutions), EOC, Ombudsman, ASLD (parent organisation), Hong Kong Jockey Club Charitable Foundation and NGO's currently providing services to our children with SLD, the Summit has provided a comprehensive review and extensive discussion on SLD. It has also served as part of the persistent and consistent advocacy work for professionals and parents to address the needs of our local SLD children and to formulate future direction on the work in SLD in Hong Kong.

Future Development of SLD Services in Hong Kong

In the concept of equality, no one should be deprived of resources and rights to attain good health where health refers to complete physical, social and mental well-being as well as reasonable educational opportunity. This is most applicable to children with SLD or children with special needs who should be given the same attention and opportunities as other child population. Comprehensive evaluation with interdisciplinary collaboration is a major component in designing successful intervention programmes for children with SLD. The collective views from various parties and stakeholders form the basis of future planning.

In the SLD Summit 2007, Professor Doris Johnson of Northwestern University, Illinois and many other local and international experts highlighted the key elements in future development on SLD. For professional training, it is beneficial to have pre-professional preparation, adequate mentoring and coaching and continuing education for professionals working on SLD. For individual development of children with SLD, emphasis should be put on enhancing self-motivation, self-efficacy, appropriate goal setting and identifying individual risk and resilience. Higher education and training opportunities as well as future career paths for these individuals should also be explored.

The views of parents were fully expressed in the Summit as these end-users' views are crucial in designing the tailor-made services for children with SLD. Parents urged to extent the supportive services from currently only in primary schools to secondary schools, vocational institutions, universities and future employment. They also requested professionals to develop systematic and effective Chinese teaching methods to enhance the learning of Chinese language in children with SLD. Other suggestions included continuous professional training, better school monitoring and school policies, extended counselling service for families and increasing public awareness and school acceptance.

Parents and professionals often think that children with dyslexia or SLD will end up in academic failure or even unmanageable career in adulthood. In fact, children with SLD often show strengths in other areas such as artistic skill, musical ability, 3-D visual spatial ability, athletic talent, global creative thinking and intuition. If they are provided with adequate supports and facilitations, they will acquire respectable personal achievement in the future.

A number of world celebrities and scientists like Walt Disney, Leonardo da Vinci and Albert Einstein were said to be dyslexia but their contributions to the world were indispensable. In local community, professionals who have been dyslexic also share their stories of struggling in childhood and the pathway to success. With appropriate help and opportunities, these individuals can accomplish their life tasks much easier and to serve the society with their specific talents. The question that remains is whether as members of the society we are ready to accept them and help them to promote their strengths. We need to equip our teachers, administrators and relevant supportive personnel with the knowledge, skill and passion for successful and sustainable implementation. All these have to be done through participation of various stakeholders to ensure relevant legislation, appropriate government policies, public support and individual effort.

Professionals who are involved in helping children with SLD must collect relevant information that allows them to arrive at accurate diagnosis and to formulate appropriate interventional plan. It is important to note that the underlying deficits of specific learning disorders persist for life and any management plan must take a life- span perspective starting from early childhood to workplace.¹³

In order to have successful and sustainable interventions for children with SLD, several salient elements must come into play - transdisciplinary coordination, parental participation, sustainable resources support, advocacy on equality, public awareness, social acceptance and commitment to SLD. Missing either one factor may make all the efforts in vain. Given the range of information and services that can address the full scope of their needs and to promote their strengths, talents and potentials, every individual with dyslexia should have the opportunity to lead a productive and fulfilling life, from which society will ultimately benefit.

Conclusion

Special Learning Disabilities (SLD) / Dyslexias are not uncommon multi-dimensional problems in modern society. In order to deal with the challenge of these disorders, the first step must be awareness, then recognition and understanding. Developmental dyslexia is not a developmental lag that sufferers will grow out of. It is an inherent biological difference causing a disorder of function, despite normal and adequate opportunities, resulting in a disabling situation especially in education. The disorder must be assessed and carefully diagnosed by professionals in the relevant field. A course of action can only be formulated on the basis of knowledge. Even for those mild cases of dyslexia where people may view as a maturational lag, a lack of discipline or a lack of motivation in learning, they still have substantial needs and require fair treatments and opportunities to function well and to develop full potentials.

In Hong Kong, the public interest in SLD has just been aroused. Further consolidative work like coordinated scientific activities, collaborated research and agreed definitions for dyslexia amongst professionals needs to be done. Trial use of new screening and assessment tools has been implemented. The next step is to mobilise local resources, lobby legislators and government policy-makers, provide in-service and pre-service teachers with professional support, substantiate parental work, and work in coordination with NGOs for the welfare and interests of children with dyslexia.

As a responsible society, we should provide adequate resources and proper assistance to individuals with special needs. Therefore, support for children with dyslexia is not a matter of discretion but a matter of the child's rights in modern and civilised community. Children with dyslexia are the designated group that has little choice but to struggle through unavoidable challenges in life. It is our obligation, as members of the society, to nurture them in a favourable environment. We believe, with appropriate education and adequate societal support, individuals with SLD can enjoy the same productive and fruitful life as the rest of people in the society. Let us work hand in hand now and plan for the future of these children.

References

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