Table of Contents

HK J Paediatr (New Series)
Vol 13. No. 3, 2008

HK J Paediatr (New Series) 2008;13:213-217

Special Section

Public Awareness, Community Services and Parent Support

IWL Ngan Keung


Abstract

Before the 1990's specific learning disabilities (SLD) did not gain much government and public attention in Hong Kong. Children with SLD were managed in the same manner as other regular students in the classroom. Teaching professionals and parents were unaware that underachievement may be a result of SLD, instead of the students being simply lazy. In 1998, a local peer support group, the Hong Kong Association for Specific Learning Disabilities (HKASLD), was established by parents whose children were identified as having SLD. Their mission was to advocate for public understanding and school support in Hong Kong for these children. Over past ten years, various resources were slowly developed by the Hong Kong Government and the community, organising training for professionals and publishing teaching and support guidelines for schools. However, a recent research conducted by HKASLD revealed that parents of children with SLD were still facing major difficulties, and suffering from psychological pressures due to inadequate school and community support.

Keyword : Community services; Parent support; Public awareness


Background of the Hong Kong Association for Specific Learning Disabilities

The Hong Kong Association for Specific Learning Disabilities (HKASLD) is a parent self-help group first established in 1998 in Tuen Mun. At that time in Hong Kong, people lacked understanding of Specific Learning Disabilities (SLD). Children who were diagnosed with SLD always had difficulties in the classroom and were misunderstood by teachers who believed they were not working hard enough or were just lazy. As a result, they were often ignored and neglected in schools. In 1998, a group of parents organised the Hong Kong Association for Specific Learning Disabilities, to work for a better and fairer school environment their own children, to improve education policies that will provide assistance to children with SLD, to support other parents in both emotional and informative aspects, and to conduct educational events for the public.

In the first five years, the Association was operated by volunteer parents without office premises. Members contributed their own time and resources to advocate for better lives for their children. From 2002, an organisation that supports self-help groups provided a small work station for the Association in Tsim Sha Tsui. It allowed us to recruit our first staff and organise activities more regularly. We finally moved to our present Wong Tai Sin Centre in 2005 as our permanent base.

Our Objectives

1. To facilitate self-help and mutual aid among parents; to help each other in solving problems of children with SLD.

2. To promote understanding and acceptance of children with SLD among the general public. To eliminate discrimination towards these children.

3. To encourage professional research and advocate for better learning environments for children with SLD.

Our Work

The Association has several main work areas to achieve our aims. We organise regular sharing sessions for parents as well as a hotline which is hosted by volunteer parents to give emotional support and information to members. We also provide training, workshops and seminars to develop members' skills in helping their children in academic and daily activities. Each month we organise regular classes for children with SLD to address the various difficulties they face. In addition, we run education programmes for teachers and the general public.

  • Parent Support and Education

    We organised:

    1. Parent sharing, learning skill workshops and family activities in seven districts: Kowloon, Hong Kong Island, Shatin, Tuen Mun, Tsuen Wan, Tseung Kwan O and Tin Shui Wai
    2. Parent hotline, professional counseling services and newsletter publication
    3. Parent training workshops, seminars for policy development and introduction of new resources
    4. SLD Online Discussion Board for parents

  • Advocacy - Meeting Government bureaux and departments, agencies and related bodies to discuss the following issues:
    1. Better monitoring and support systems in primary schools
    2. Funding and resources support for secondary schools
    3. Teacher training
    4. Support for further education, e.g. Vocational Training Council courses
    5. Pre-employment training and employment support

  • Children and Youth Development
    1. Gymnastic classes, football programmes, hiking, etc. in seven districts
    2. Leadership training for teenagers with SLD (FreeD House): Youth Vision
    3. English programme: English improvement project for teens
    4. Seminars on studying and learning skills

  • Public Education
    1. Media Interviews
    2. "Wordless Gala" every two years
    3. Websites
    4. Community and school talks

The first major achievement of HKASLD was to advocate for the Equal Opportunities Commission to include SLD in the Code of Practice (CoP) on Education under the Disability Discrimination Ordinance (DDO) in 2000. This was a big step forward in Hong Kong, whereby SLD was not only recognised as a type of disability under DDO, but used as one of the conditions to illustrate disability discrimination in the CoP on Education issued under the DDO.

Soon after, our parents requested the Hong Kong Examination and Assessment Authority (HKEAA) to provide accommodations to SLD students in public examinations in 2002/2003. A special pamphlet informing schools and parents of the eligibility and procedures for students with SLD to apply for accommodations in the Hong Kong Certificate of Education Examination (HKCEE) and the Hong Kong Advanced Level Examination (HKALE) was prepared and disseminated by HKEAA.

In the following few years, the Education Bureau (EDB) published various teaching, support and assessment guidelines for local primary schools, and began organising teacher training workshops to help students with SLD. In 2003/2004, a "New Funding Model" was introduced by the EDB which provided $10,000 or $20,000 financial subsidies (the latter for students requiring individualised education programmes) to primary schools. However, there is still strong demand from parents to improve the monitoring system and to extend the programme to secondary schools. In the past two years, the Government conducted a "Review of Hong Kong Rehabilitation Programme Plan" which was finally released in 2007. At this Review, the Association, together with other advocates, successfully influenced the Government to add SLD as a new category of disability in the final document. In future, SLD support services should officially cover identification and assessment, pre-school training, education, employment and other services under the purview of rehabilitation.

The Public Awareness of Specific Learning Disabilities in Hong Kong

Although SLD has been a familiar topic in countries overseas for many decades, discussion and awareness are just beginning in Hong Kong. Before the 1990's, special need students (SEN) in mainstream schools under inclusive education applied to those with physical handicap, hearing and visually impairment, mental retardation and emotional difficulties. There was zero awareness about SLD.

From the 2000's, with the Disability Discrimination Ordinance inclusion of SLD and distribution of leaflets about services for SLD by the Hong Kong Examination and Assessment Authority, local schools and society slowly showed increased understanding about SLD. However, the daily support offered in schools for these students were extremely insufficient and ineffective. Teachers lacked knowledge and teaching methods, schools lacked resources and guidance from the Government, keeping SLD students in a poor learning situation. The situation severely undermined students' confidence and resulted in negative self image and serious underachievement. SLD students often developed emotional and psychological problems, and attempted suicide was not uncommon. The situation also resulted in many family problems.

Seeing our children and their parents suffer from painful circumstances, HKASLD started meeting with parties from the Legislative Council, the EDB and other Government departments, and education institutions. We expressed our needs and difficulties and urged them to be concerned about and to support SLD children. At the same time, we conducted school talks to teachers, held media interviews and organised community education programmes.

In response to increasing parental and professional demands, The Hong Kong Test of Specific Learning Difficulties in Reading and Writing for Primary School Students was published in July 2000. The Hong Kong Specific Learning Difficulties Behaviour Checklist, for Primary One to Primary Four Students was also distributed to all local schools in 2001. More and more SLD support guidelines and teacher training workshops at foundation level were set up by EDB. A new funding system was launched for primary schools to support SEN students.

From 2001 to 2005, increasing awareness among primary school teachers and social workers was clearly seen. They showed higher acceptance of SLD students and simple accommodations were given to students during lessons and tests or examinations.

However, society continued to perceive that SLD issues were related only to school or learning. Many efforts were spent only on education. This perception ignored the fact that SLD is a consistent and life-long disability instead of a short-term learning difficulty. So when our children grew up and faced further education or employment problems, other institutions did not know anything about SLD or how to give support.

From 2005, parents began to feel intense need for programmes in secondary schools and continued education, and for employment support. They asked for better and more comprehensive policies from Government and more cooperation among various Government departments and concern groups. When SLD was finally included in the Hong Kong Rehabilitation Programme Plan and The Hong Kong Test of Specific Learning Difficulties in Reading and Writing for Junior Secondary School Students was published in 2007, secondary schools, other Government departments such as the Labor and Welfare Department, community rehabilitation centers and local media grew more aware of the pervasive life issues of SLD in Hong Kong.

Community Services for Specific Learning Disabilities in Hong Kong

Community support services for SLD can be divided into three main categories: from the Government sector, Non-Governmental Organizations (NGO) sector and the private sector.

The Education Bureau and Child Assessment Services in the Department of Health provide the main sources of support to children with SLD and their families. Child Assessment Services is responsible for assessment and diagnoses of SLD, evaluation of any co-occuring developmental problems by allied health disciplines such as occupational therapists, and organisation of parent support workshops. Children between 0-12 suspected of having developmental problems can seek help from them. The Education Board is responsible for a wider scope. It not only provides assessment services to schools, but is also responsible for planning and allocating resources to address inclusive education policy issues, professional training, school support, funding and monitoring. Since children spend most of their time in school, the Education Bureau is expected to be a major source of support to children with SLD and their families.

In October 2006 we sent out more than 700 questionnaires to active members and received 176 responses. We found that 62.5% of parents had discovered by themselves that their children might be suffering from SLD, with only 21.59% only being identified by their teachers. Almost 70% of children were assessed in Child Assessment Centres, and about 25% of students were assessed in schools either by EDB or school-based educational psychologists. The waiting time for assessment services were quite long: ranging from 3 to 6 months (31.8%) and 6 months to one year (38.64%), while 11.93% had to wait for more than one year. As parents, we therefore had to take on heavy roles in identification and helping processes before our children finally received support from various professionals. Government and community support services still have other drawbacks that we will address later.

Many parents also suffered from other hardships including psychological and financial problems. More than 55.11% of parents reported that they had negative thoughts when taking care of children with SLD, 46.02% and 43.18% had insomnia and depression, and nearly 30% needed professional counseling. The psychological aspects of carers are easily ignored by society, with most of the attention and resources going to the children.

A family with SLD child invariably needs to spend extra money on supporting the child. Our findings revealed that 80% of families had to shoulder additional expenses on learning and study skills workshops, tutorial groups, and occupational or physiotherapy trainings. The average increase in expenses per month were between HK $1001-$1500 and $1501-$2000.

In Hong Kong, families with children with SLD are not entitled to receive any financial subsidies from Government or the Education Bureau. The New Funding Model grant goes to primary schools and it adopts a whole-school approach in providing support and developing an environment of acceptance for students with SLD. But there is no assurance system for measuring how children with SLD benefit from it, in terms of improvement in academic performance or personal confidence and motivation. Only 13.64% of parents knew that their children were receiving effective support under the New Funding Model, while more than 36% and 46% reported that their children either did not benefit from it, or did not know anything about this school subsidy, respectively. The unclear intervention and insufficient communication between schools and parents disappointed many parents. They turn to look for support in the community.

In the past few years, there has been a rapid increase of SLD services in NGOs and the private sector. They provide assessment, learning or studying skills tutorials, emotional management programmes, self-confidence development programmes, potential development programmes, multi-sensory training and others. Most of these services are organised by social workers or other non-professionals, and are mainly designed to help children at primary school levels. The needs of youths with SLD and their families remain unfulfilled.

Interestingly, survey findings also showed similar dissatisfaction with the services provided by the NGOs. About 51.70% knew of 5 to 10 NGOs around their neighbourhoods that provide services for SLD, while 42.61% were unaware of any such NGOs nearby. 50.57% respondents said they did not use these services because the outcomes were not effective or because trainers did not understand SLD characteristics.

In our research 60.23% of students with SLD were receiving accommodations in schools, 15.91% receiving special teaching methods, and 19.32% receiving psychiatric services. Parents also articulated the needs of their children in the following areas: special teaching methods (76.14%), school accommodations (73.3%), public examination accommodations (43.75%), counseling services (43.75%), psychological services (40.91%) and family counseling (28.41%). Such results demonstrate that the school is presently considered by parents as the primary source of support. Although the EDB has already started working in schools, there is still a long way to go. Promotion of community awareness and enhancement of professional training are urgent tasks in order that quality community services for children and their parents can be provided.

Parent Needs and Service Implications

The development of SLD support services in Hong Kong has made progress over the past ten years but identification tools and teaching materials for SLD in Chinese are still limited. Service models and comprehensive policies on SLD in education, medical and employment sectors remain immature. Unlike the US or Canada, where policies and principles apply to all levels of institutions, including colleges, universities and employers, on the support that should be provided, provision of grants, manpower, as well as parental rights and roles, we in Hong Kong are still working at trying to offer limited support at the primary school level.

A better education system for students with SLD and family support services are core areas in response to parents' needs. Parents of children with SLD are now suffering from ineffective and inconsistent support from schools. Each school has total autonomy to allocate resources for their own areas of development, instead of following a policy that regulates them in assigning budget and resources to ensure an equal opportunity learning environment for all special need students. Therefore conflicts arise between schools and parents.

A good school policy for students with SLD and better monitoring system are the first priorities on the list. Services must be extended to secondary schools, vocational training institutions, universities and employment in order to help teenagers and young people with SLD connect with our society in the future. Effective teaching methods and materials for Chinese students with SLD need to be developed immediately. Involved professionals e.g. teachers, psychologists, occupational therapists and social workers should receive advanced training in SLD to provide practical advice and assistance to parents.

Counseling services help parents to have better understanding when dealing with matters related to their children with SLD. Parents, with their additional financial and emotional stress and anxiety over long periods should get regular support from social workers. Families are the fundamental social system for nurturing one's values and healthy well-being. The breakdown of family functions may result in serious long term detrimental outcomes to society.

 
 

©2014 Hong Kong Journal of Paediatrics. All rights reserved. Developed and maintained by Medcom Ltd.