Fung_[publication_year]_Brain-and-Development

Brain & Development 27 (2005) 141–147 www.elsevier.com/locate/braindev Original article Program for Chinese children with developmental disabilities—the Hong Kong modelq Cheuk-Wing Fung, Virginia Wong* Division of Neurodevelopmental Paediatrics, Department of Paediatrics and Adolescent Medicine, The University of Hong Kong, Queen Mary Hospital, Pokfulam, Hong Kong, China Received 25 February 2003; received in revised form 28 November 2003; accepted 28 November 2003 Abstract Developmental disabilities (DD) are common childhood problems with significant impact on society. Early identification is important as there is potential for improvement through interventional/educational/(re)habilitative measures. There are currently no data revealing this situation in China. We review the current model of identification and management of Chinese children with DD in Hong Kong, a southern city in China. Our model was developed in the early 1960s and our system had been originally adopted from the Western culture due to political reasons, as Hong Kong was a British colony. This was modified over the years to suit our own unique, mixed Eastern and Western culture. With the expanding Western influence in mainland China recently, we hope this integrated model can be implemented in other parts of China. q 2004 Elsevier B.V. All rights reserved. Keywords: Developmental disabilities; Early identification; Rehabilitation; Chinese; Children 1. Introduction Developmental disabilities (DD) are common childhood problems with significant impact on the society. It is estimated that DD occur in about 5– 10% of preschool-aged children [1]. The spectrum of developmental problems is wide, including global developmental delay, developmental language delay/disorder, dysarticulation, developmental coordination disorder, dyslexia, specific learning disabilities, attention deficit/hyperactivity disorder, autistic spectrum disorders, motor impairment, visual/hearing impairment and cerebral palsy. DD consists of a heterogeneous group of early-onset chronic disorders that share the core features of predominant disturbance in the acquisition of cognitive, motor, language, or social skills. DD have a significant and continuing impact on the developmental progress of children [2]. Early identification of DD is important because of the potential for improvement of outcome through various interventional/ q This paper had been presented at the International Conference on Developmental Delay in Children, held in Taiwan (July 22– 23, 2002). * Corresponding author. Tel.: þ 852-2855-4485; fax: þ 852-2855-1523. E-mail address: vcnwong@hkucc.hku.hk (V. Wong). educational/(re)habilitative measures. It is especially important to recognize delay in language skills early, because early intervention may improve the outcome of children with hearing loss, mental or pervasive developmental disorders [3,4]. In order to make a definitive diagnosis of these disorders, a session which involves thorough history taking physical examination and a detailed developmental assessment should be required. This is a time-consuming procedure. Moreover, developmental problems may be so subtle and under-recognized that there is usually a time lag between the onset and the actual clinical presentation or referral. As child health advocates, early recognition and prompt referral are essential. Therefore, ‘developmental surveillance and screening’ of infants and young children will be an important method of detecting developmental problems. Developmental screening and surveillance program are well established in the Western culture. There are no data of this system in Chinese. We therefore review the situation in Hong Kong Chinese children. The model of early identification and management of children with DD will be discussed. A multidisciplinary management model will be illustrated using our centre, the Duchess of Kent Child Assessment Centre (DKCAC). 0387-7604/$ - see front matter q 2004 Elsevier B.V. All rights reserved. doi:10.1016/j.braindev.2003.11.007 142 C.-W. Fung, V. Wong / Brain & Development 27 (2005) 141–147 2. Developmental paediatrics in Hong Kong—the past and the present 2.1. History of developmental paediatrics in Hong Kong ‘Developmental paediatrics’ as a discipline in Hong Kong began in the 1960s. Paediatricians from the Department of Paediatrics under the University of Hong Kong conducted a longitudinal study of growth and development of children from birth to 8 years of age. The information from the study was subsequently incorporated into a developmental screening test and was later adopted by the Medical and Health Department (MHD), Hong Kong Government, in 1978 to screen all children in the community from birth to 5 years. The importance of assessment of children with disabilities was established in 1977 based on the consultancy from the government to adopt a UK model [5]. The MHD opened the first Child Assessment Centre (CAC) with multidisciplinary team assessment for children. In the past, clinicians mainly attended to the medical and physical aspects of children. A holistic approach was gradually introduced, which involved the child’s psychological and social development as well. Until 1989, all assessment centres and hospital paediatric units were under the MHD. In 1989, MHD was separated into the Department of Health (DH) and the Hospital Authority (HA). The DH safeguards the health of the community through preventive and assessment services. Thus, maternal and child health service, child assessment service and student health service belong to MHD. The HA is a statutory body for management of all public hospitals in Hong Kong. 2.2. The present situation in Hong Kong The DH plays the role of a health authority and an adviser. It operates a wide range of services to promote health and prevent diseases at the primary health care level, including child health, maternal health (antenatal and postnatal care), family planning, cervical cancer screening and woman’s health [6]. This forms the basis of the entire health care system. A comprehensive range of health and disease-prevention services are provided for children aged , 5 years in Maternal and Child Health Centres (MCHC) through an Integrated Child Health and Development Program (Appendices A – C). The estimated total population in Hong Kong was about 6,720,700 in 1999. There were 333,300 children below 4 years old; 412,700 children aged between 5 and 9, 436,900 children aged between 10 and 14, and 458,800 aged between 15 and 19. The crude birth rate was 7.6 per thousand population [7]. From these figures, one can appreciate that DH has to provide services to cover this group of population in order to provide optimal primary Fig. 1. Current system of identification of children with developmental disabilities in Hong Kong. health care services. The current model in Hong Kong is illustrated in Fig. 1. 2.2.1. Family Health Service The Family Health Service and the Student Health Service of Hong Kong cover health care from birth to adolescence [6]. The Family Health Service provides a comprehensive range of promotive and preventive health services for women of childbearing age and children from birth to 5 years. It operates 50 MCHC which are easily accessible to the whole population. Concerning child health services, physical examinations are carried out in the first visit between 2 and 5 years of age to detect early any abnormalities by trained doctors and nurses [6]. An immunization program has been devised to protect infants and children from childhood infectious diseases during these visits. A ‘Comprehensive Observation Service’ (COS) has been introduced since 1978 for early detection of developmental abnormalities. Screening tests were conducted at five stages initially by trained nurses [6] (6 weeks, 6, 9, 18, 36, and 60 months) until 1986 when this was reduced to three key ages due to poor compliancy after 18 months. Thus, children were screened at 3 months, 6– 9 months and 3 years by trained nurses in conjunction with the immunization schedule to improve the compliance rate [6]. Screening includes assessment on gross motor and fine motor development, vision, hearing, speech and behaviour adaptability via interviews and observations. Hearing screening tests were performed at 6 – 9 months (using Distraction Test) and 3 years (using Speech Discrimination Test). Visual acuity test was performed at 3 years using single STYCAR letters. Growth parameters such as body weight, body length/height, and head circumference were measured as well. Any child who failed the screening tests or was suspected of having developmental problems would be referred to the CAC or C.-W. Fung, V. Wong / Brain & Development 27 (2005) 141–147 143 appropriate paediatric clinics for diagnostic workup. Developmental screening service is targeted to all children born in Hong Kong, both public and private sectors. It is free of charge and no referral is required to attend the centre. However, a small percentage of children born in the private hospitals (, 1%) would not attend these MCHCs. Apart from COS, the MCHC had implemented other screening tests such as language skills test for 1– 3-year-old children (Cantonese version) and the Checklist for Autism in Toddlers (CHAT, translated into Chinese) for children aged . 18 months. In 2001, 160,234 children were screened in the COS. These included new and old cases, and revisits when further observations were required. However, a certain proportion of children defaulted the screening sessions. These defaulters might have come from families with caretakers who did not have time to attend the sessions, and had minimal awareness of possible DD and adequate care to the children. The caretakers might be single parents, illegal immigrants who would return to mainland China after delivery, parents who were engaged in their jobs or others with complicated psychosocial issues. The children from these families might have developmental problems that would be undetected. This reflects the potential limitation of the scoring system and poses room for further improvement in order to identify these ‘at risk’ children. 2.2.2. Student Health Service The Student Health Service was introduced by the DH in 1995/1996. It aimed to safeguard both the physical and psychological health of school children through comprehensive, promotive and preventive health programs and enable them to develop their potential. Enrolled students were given an annual appointment to attend student health service centres for a series of health services designed to cater for the health needs at various stages of development. Such services include physical examination; screening for health problems related to growth, nutrition, blood pressure, vision, hearing, spine, sexual development, psychological health and behaviour; individual counselling and health education. Students found to have health problems were referred to the special assessment centres and specialist clinics for further assessment and follow-up. If problems were suspected, based on the complaints from the parents and students themselves or observations made by the staff within this program, these students were be referred to CAC or hospital clinics for a detailed workup. The service was offered to all primary and secondary school students, both in normal and special schools (mental or physical handicap). Students could enroll through their schools at the beginning of each school year in September. This service was free of charge. 2.2.3. Child Assessment Centres After screening, any child from birth to 12 years old, with suspected DD was referred to CAC for a comprehensive developmental and behavioural assessment. Currently, there are seven CACs in Hong Kong, with six centres under the DH, and our centre, the DKCAC (inaugurated in 1985– 1987 under the Department of Paediatrics of the University of Hong Kong, and under the HA since 1990). A multidisciplinary assessment team consisting of developmental paediatrician, clinical psychologist, speech therapist, occupational therapist, physiotherapist, audiologist, orthopedist or optometrist, medical social worker, and a nurse will provide comprehensive assessment (e.g. physical, psychological, social aspects) for diagnosis and functional evaluation of disabilities. This team will also provide therapy and training for selected children; developmental guidance, counselling and support for parents; and referral of children and parents to appropriate agencies for medical, developmental, educational and social services. For all CACs, referrals from registered doctors and psychologists are needed, and are currently based on a regional distribution as there are 19 regions in Hong Kong. The common sources of referrals are from the doctors of MCHCs, the Student Health Service, paediatricians and other clinicians from hospitals who are involved in child care, and clinical psychologists and doctors from the private sectors. 2.2.4. The Duchess of Kent Child Assessment Centre model During each assessment session, the paediatrician will obtain a detailed history and make a thorough physical examination. Behavioural assessment will be made throughout the whole period. Several diagnostic tools are used in DKCAC. We use the Griffiths Mental Developmental Scale (based on UK) [8,9] for assessment of the overall developmental profile. After assessment, each aspect of development will be given a sub-quotient with a corresponding mental age. A general quotient with an overall developmental age will also be given. ‘Symbolic Play Test’ of Lowe and Costello (based on the UK model) [10] is another tool for assessment of language comprehension. For this test, four sets of toys are presented to the child, without verbal instructions, to observe how s/he plays with these toys. A corresponding mental age will be given. As for autistic spectrum disorders, we are using different diagnostic instruments such as DSMIV and the Childhood Autism Rating Scale (CARS). [11] Recently, we started using the autism diagnostic interviewrevised (ADI-R) [12] which is the gold standard to diagnose autistic disorder in a clinical or research setting. We will also perform visual and audiological screening tests. If the result is suspicious, referral to our optometrist or audiologist will be arranged. Different visual screening tests will be used according to the age of the child. These include STYCAR mounted balls test (6 months – 2 years), toy matching test and STYCAR single-letter, 5-letter, 7-letter visual charts (3 – 5 years) based on the UK model. For audiological screening, distraction test (6 months – 18 months) and picture discrimination test (more than 18 months) are used. Each member of the multidisciplinary team plays an important role to have an accurate assessment of the child. 144 C.-W. Fung, V. Wong / Brain & Development 27 (2005) 141–147 After each assessment session, the attending paediatrician will arrange further referrals to other allied health professionals for assessment if necessary. Our clinical psychologists perform assessments on children with suspected attention deficit hyperactivity disorder, dyslexia, specific learning difficulties, psychological/behavioural problems, and mental retardation. Medical social workers are important to assess the psychosocial and financial aspects of the family. They also help to co-ordinate the choice and application of entry into various institutions involved in the training and education of children with DD. Physiotherapists will assess the gross motor function. Occupational therapists will deal with fine motor function, visual-spatial, visual-perceptual aspect, oromotor function and seating posture of children with hypotonia or cerebral palsy. Speech therapists will assess language, feeding and oromotor function. Optometrists and audiologists will perform evaluation of visual and hearing function using special techniques. After assessment by different team members, a definitive diagnosis and a management plan can be usually made. This team should work together and formulate an intervention plan. As our centre is also a teaching hospital for medical students of the University of Hong Kong, we also emphasized on teaching and research in addition to clinical service. 3. Management of developmental disabilities in Hong Kong 3.1. Multidisciplinary team In order to have comprehensive care for our children, each member of the multidisciplinary team needs to communicate with each other to form a management plan. This forms the basis of rehabilitation and habilitation for children with DD. In Hong Kong, the current resources can generally be represented by Fig. 2. For children with DD, there may be other associated medical problems. Management involving other specialists, including child psychiatrists, ophthalmologists and ENT surgeons are therefore important. Together with the hospital or community paediatricians, we can have a more comprehensive intervention of a child with DD. Medical rehabilitation involves training by physiotherapists, occupational therapists, speech therapists and clinical psychologists. Medical social workers will coordinate the choice and application of entry into various institutions as described below. 3.2. Preschool special services The training services in Hong Kong can be classified into preschool special services and school-age special education. Preschool special services include Early Education and Training Centre (EETC), Integrated Child Care Centre (ICCC), Special Child Care Centre (SCCC), Integrated Program for Mildly Disabled Children in Kindergartens (IK/G) and Preparatory Class in Special School. EETC is provided for disabled children from birth to under 6 years old who are not currently receiving other preschool rehabilitation service. It aims at helping parents in Fig. 2. Intervention of developmental disabilities in Hong Kong. PT, physiotherapists; OT, occupational therapists; ST, speech therapists; CP, clinical psychologists; Audio, audiologists; Opto, optometrists; Child Psy, child psychiatrist; Opthal, opthalmologists; ENT, ear, nose, throat surgeons; EETC, Early Education and Training Centre; ICCC, Integrated Child Care Centre; SCCC, Special Child Care Centre; IK/G, Integrated Program for Mildly Disabled Children in Kindergartens. C.-W. Fung, V. Wong / Brain & Development 27 (2005) 141–147 145 training and caring for their disabled children, and provides individual and group training for disabled children, family guidance to parents and a toy library service. ICCC provides individualized training program within an ordinary full-day child care centre with one additional special child care worker for every six disabled children. Any patient aged 2 to under 6 with suspected or assessed mild grade mental handicap, slight physical handicap, mild to moderate hearing impairment or visual impairment is eligible for this service. SCCC provides intensive training and care for moderate or severe mental, physical, hearing or visually impaired children aged 2 to under 6. It aims at developing their fundamental developmental skills, sensory, perceptual, motor, cognitive, communication, social and self-care skills. Certain special care will also be provided in some SCCCs. SCCC with special provision entertains disabled children aged 2 to under 6 with autistic spectrum disorders. One additional special child care worker is present for every six patients to provide extra care and training. It aims at developing their social skills, attention span and the ability to follow instructions and rules so that they can learn and progress through SCCC program. SCCC for the hearing impaired children provides intensive auditory, speech and language training for the children aged 2 to under 6 with severe to profound hearing loss. Residential SCCC has facilities for training and care of those children aged 0 to under 6 with disabilities which are so severe or complex that they cannot be adequately cared for either by a day SCCC or by their families. This service is also provided for those children who are homeless, abandoned, or whose families cannot care for them adequately. IK/G is a non-profit-making kindergarten which offers intensive remedial training to mildly disabled children aged 3 –6. An additional trained teacher is present to promote socialization and integration opportunity for them. Preparatory class in special school helps children aged 4 to under 6 with visual, physical, or severe to profound hearing impairment. These children may also have mild to moderate mental or other handicaps. 3.3. School-age special education School-age special education in Hong Kong aims to provide children having DD with education necessary to help them develop their potential to the full, achieve as much independence as they are capable of, and become well-adjusted individuals in community. The education of these children, whether in special or in ordinary schools, is basically in line with that provided for ordinary children. The present policy aims at placing children with special educational needs whenever possible in ordinary schools so that they receive the fullest benefit of education from mixing and interacting with ordinary children in an ordinary environment. Under the Education Department, the Special Education Services Centres will be responsible for placement of children with DD into various schools and programs. Special schools in Hong Kong have different categories for children with visual impairment, hearing impairment, physical handicap, mental handicap and social adjustment problems. Another special school is a hospital school which is regarded as one school with classes operating in 17 hospitals over the territory. For children with DD who are allocated to ordinary schools, special education classes are available which include those for visually impaired children, hearing impaired children and intensive remedial teaching program for children with learning difficulties. Remedial teaching service includes school-based remedial support program, resource teaching centres, which provide adjustment programs for children with behaviour or adjustment problems. The class size of special schools and special education classes in ordinary schools ranges from 8 to 20 per class, depending on the types of children served. The staffing ratio also varies according to the types of special educational provision, ranging from 1 to 1.5 teachers per class. Besides, there are various types of additional teachers provided in these schools to cater for children’s different special educational needs. While the age of admission to a special school is 6 years, children are admitted to some categories of special schools at 4 years of age. Whenever possible, students are transferred from special schools to ordinary schools as soon as they no longer require the special facilities and resources in special schools. In general, the mainstream school curriculum framework is followed. However, to cater for the varied learning needs of students, adapted or extended curricula on different key learning areas, such as perceptual motor training, programs on daily living skills, are provided. Special schools also offer a wide range of school activities aimed at enriching the daily life experiences of day and residential students. For those students who have learning difficulties and cannot benefit from the ordinary curriculum even with the help of the existing intensive remedial services, skills opportunity schools are alternatives. These are junior secondary schools providing a modified curriculum to cater for these children who form the bottom 0.9% of the ability range of the 12– 14 age group. Through this mode of schooling, education programs containing significant practical skill elements are provided to prepare them for further training in skills centres, technical institutes, or open employment. 3.4. Special training programs In Hong Kong, training programs are available for specific disabilities such as attention deficit hyperactivity disorders and autistic spectrum disorders. These are provided by the day centres of various child psychiatric departments and other non-governmental organizations. 146 C.-W. Fung, V. Wong / Brain & Development 27 (2005) 141–147 For those children with severe grade mental retardation, long-term residential care is provided. 3.5. Psychosocial support network Different parents associations and support groups are formed in Hong Kong. Taking care of these children may result in both physical and psychological exhaustion in the families, day and overnight respite care is provided by various organizations. Immunization program Child health and developmental surveillance program Vaccination against nine infectious diseases Physical examination Growth monitoring Developmental surveillance Hearing and vision screening Department of Health, Family Health Services, The integrated child health and development program (0 – 5 years) [http://www.info.gov.hk/dh/main_ser/ familyhealth/ichpdst.htm] 4. Conclusion As paediatricians, we are responsible for children’s physical, mental, and emotional health from conception to maturity. We must be concerned with social or environmental influences, which have a major impact on the health and well being of children and their families. DD are common problems in children. Implementation of an ideal health care system is of utmost importance. In Western countries such as the United States, the primary care paediatrician’s office is the place where most children younger than 5 years are seen. This is ideal for developmental and behavioural screening [13]. The health care system in Hong Kong is different where majority of young children are screened by MCHCs [14]. This paper illustrates the importance of continual developmental surveillance from birth to adolescence in Hong Kong. Although different countries have different medical or health advisory systems, the concept of early developmental screening and surveillance with appropriate intervention for children with DD is universal. Our program modified over the past 40 years should be our ideal model for China to adopt in the future, especially with the rapid Western influence in Chinese culture. Appendix B. Program of immunization Age New born Immunization recommended BCG vaccine Polio type I Hepatitis B vaccine, first dose Hepatitis B vaccine, second dose DPT vaccine (diphtheria, pertussis and tetanus), first dose Polio trivalent, first dose DPT vaccine (diphtheria, pertussis and tetanus), second dose DPT vaccine (diphtheria, pertussis and tetanus), third dose Polio trivalent, second dose Hepatitis B vaccine, third dose MMR vaccine (measles, mumps and rubella), first dose DPT vaccine (diphtheria, pertussis and tetanus), booster dose Polio trivalent, booster dose DPT vaccine (diphtheria and tetanus), booster dose Polio trivalent, booster dose MMR vaccine (measles, mumps and rubella), second dose DPT vaccine (diphtheria and tetanus), booster dose Polio trivalent, booster dose 1 month 2 – 4 months 3 – 5 months 4 – 6 months 6 months 1 year 1 – 1/2 years Appendix A. The integrated child health and development program (0 – 5 years) Primary 1 Childcare and parenting program Preparation for parenthood Building positive relationship Promoting child development Managing child behaviour Breastfeeding Nutrition Home safety Oral health Other newborn and childcare issues Primary 6 Department of Health (content page), Program of immunization [http://www.info.gov.hk/dh/publicat/web/ immuni_e.htm] C.-W. Fung, V. Wong / Brain & Development 27 (2005) 141–147 147 Appendix C Department of Health, Family Health Services, The integrated child health and development program [http:// www.info.gov.hk/dh/main_ser/familyhealth/schedule.htm] References [1] Simeonsson RJ, Sharp MC. Developmental delays. In: Hoekelman RA, Friedman SB, Nelson NM, Seidel HM, editors. Primary pediatric care, 2nd ed. St Louis: Mosby; 1992. [2] American Psychiatric Association, Diagnostic and statistical manual of mental disorders, 4th ed. 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