( (WP)MNH/ICP/MND/002-E
15 May 1985 ENGLISH ONLY
I REPORT IRKING GROUP ON MENTAL RETARDATION
Sponsored by the WORLD HEALTH ORGANIZATION REGIONAL OFFICE FOR THE WESTERN PACIFIC
Manila, Philippines 18-22 February 1985
Not for sale Printed and di.tributed by the Regional Office for the Western Pacific of the World Health Organization Manila, Philippines
NOTE
The views expressed in this report are those of the members of the Working Group on Mental Retardation and do not neces8arily reflect the policies of the Organization.
This report has been prepared by the World Health Organization Regional Office for the Western Pacific for the governments of Members States in the Region and for those who participated in the Working Group on Mental Retardation, held in Manila, Philippines, on 18 - 22 February 1985.
CONTENTS
Page 1.
IN 'rRODUCT ION ..................................................................................... ..
1 1 2 2 2 2 3
:2 ..
OBJECTlv!;S OF TIlE MEETIN('; ••••••••••••••••••••••••••••••• SUMMARY ON COUNTRY PROFILES ........................................................ ..
3.
3.1 3.2 3.3 3.4
introduction ..... Epidemiology ............................................................................ .. Etiological factors ................................... . Prevention ................................................................................ .. O' ....................................................................
..
3.5 4.
Care, educaion and rehabilitation •••.•.•••.••.•••••
4 4
TECHNIGAL PRESENTATIONS .
.............................................................. .
4.1 4.2
Epidemiology.............................................................................. Development of services for the mentally retarded..
4 5
s.
PRIORITY AREAS FOR INTERVENTION •••••••••••••••••••••••••
5
5.1
In troduc t ion ............................................................................ ..
5 6
5.2 5.3 6.
Prevention at mental retardation ••••••••••••••••••• Community care of mentally retarded people ••••••••• TOPICS .................. oo . . . . oo .. oo . . . . . . . . . . . . . . . . . . . . . . . . . . . .
11 16
SPE~lFIC
6.1 6.2 6.3 6.4
6.5 6.6 6.7
Neurosciences Programme ..•.....•.•....•••••.••••••• Public education .•••. ..•. ....•••.••..... .......•.•• Education and training....................................... Auti8ticChildren •••••••••••.•••••••••.••• ~ •••••••• Collaboration with nongovernmental organizations •• , Early intervention •••..... ' ... •••••••. ..• ..•••••.•• Epilepsy.................................................................
16 17 17 17
17 18 18 18
7.
RECOMMENDATIONS .............................................................. ..
ANNEX 1 ANNEX 2 ANNEX 3
OPENING SPEECH OF THE REGIONAL DIRECTOR ••••••••••• LIST OF MI!ItBERS, CONSULTANTS AND SECRETARIAT...... COUNTRY PROFILES .................................. "....................
21 23 27
ANNEX 4 -
STRATEGIES FOR EPIDEMIOLOGICAL STUDIES OF MENTAL RETARDATION IN DEVELOPING COUNTRIES ••••••••••••••• TIiE DEVELOPMENT OF SERVICES FOR TIlE MENTALLY RE TAB..DED .......................................................................... REGIONAL BIBLIOGRAPHY •••••••••••••••••••••••••••••
29
ANNEX 5 -
39 45
ANNEX b -
1• I
I NTRODUCT ION
I ,
A meeting of the Working Group on Mental Retardation was held from 18 to 22 February 1985 at the World Kealth Organization (WKO) Regional Office for the Western Pacific in Manila. ThlS was the first meeting on the subject in the Region. The group waa called to make recommendations for the development of programmes on mental retardation in countries or areas Ln the Region. Dr S.T. Kan, Acting Regional Director, opened the meeting and welcomed the members on behalf of Dr Hiroshi Nakajima, Regional Director, who was on a mission abroad and unable to attend.
In his message, the Regional Director observed that - according to presently available knowledge, mental retardation can effect up to 3% of a population: - methods are already available for preventing some types of mental retardation especially in children; and - teChniques are available for overcoming or minimizing existing handicaps in many instances to an extent where the individual may become self-supporting. The opening speech of the Regional Director is attached as Annex 1. The meeting was attended by thirteen experts in various disciplines from ten countries/areas, currently engaged in planning, treatment, care, resesrch and training in mental retardation. Dr Florentino Solon, Philippines, was appointed Chairman, Dr D.H.G. Beasley, New Zealand, Vice-Chairman, and Dr J.O. Miller, Australia, and Dr Wong Sze Tai, Singapore, Rapporteurs. Dr Bruce Schoenberg, United States of America, and Dr John Price, Australia, assisted in the preparation, conduct and reporting of the meeting as consultants. The list of members, consultants and secretariat is attacned ss Annex 2.
2.
OBJECTIVES OF THE MEETlNG
The Objectives of the meeting were a8 follows: (1) to review a~allable data and information on tbe epidemiology of mental retardation in the Region, with particular emphasis on developing countries;
(2)
to ascertain the magnLtude, main causes and characteristic feature. of mental retardation in the Region;
- 2 -
,Jj
to identify priority areas for intervention in order to reduce the prevalence and severity of mental retardation, including prevention, early detection, early stimulation methods, treatment of epilepsy and other available measures.
3.
SUMMARY OF
~OUNTRY
PROFILES
3.1
Introduction
Fourteen reports on the situatl.on with respect to mental retardation 1n the Region were presented alto~ether.
3.2
Epidemiology
Reliable data are unavailable 1n many countries. When data from surveys are available, they vary considerably as to their reliability and accuracy. Many of the national representatives noted the unreliability and limitation of the surveys data quoted in their country profiles. A few of the representatives, notably tllOse from China and Japan, described the methodologies used in their surveys. This is useful as it allows a better evaluation of the reported prevalence rates. The prevalence rates for mental retardation were quoted by country representatives in a number of the country profiles. However, these prevalence figures are admitted not to be reliable because they do not depend on the same definitions of mental retardation or the same methods of measurement, case Ascertainment, etc, emphasizing the need for standardized epidemiological procedures. Most of ttle studies show a higher prevalence rate for mental retardation in males than in females. TWo studies from Szechuan (China) and the Phl.il.ppines report a higher prevalence rate in mental retardation in rural than in urban areas. In only one country profile is there mention vi the percentages of other handicaps/disorders associated with mental retardation found in the epidemiology study. One country profile from Japan reports the prevalence rate of mental retaruation combined with epile~sy as 1.4 per 1000 aged 0-10 years (see 6.7). 3.3 Etiological factors
Data on the etiological factors of mental retardation are classified in the country profiles. The differences in the way etiological factors are recorded point to the problems ,n the classification of mental retardation.
It is not posslble to tabulate and compare the conditions associated with mental retardation (likely to have etiological significance) for each of the Western Pacific countries because of the difference in the categories of clinical conditions used. Furthermore, not all the country profiles contain informstlon on this topic.
- 3 -
The following points regarding the more severe forms of mental retardation are interesting, viz in Tonga mental retardation has c011llllonly been caused by bacterial meningitis, in China by neonatal asphyxia, in Singapore by neonatal jaundice mainly related to b-G.P.D. deficiency and in Japan it is related to bleeding in young children due to lack of vitamin K. 3.4 Prevention
The kinds of preventive strategies and programmes employed and their effectiveness depend on the socio-economic and cultural circumstances of the country, the range and quality of its services and the priority it places on the control of mental retardation. In Japan tnere is some evidence of a reduction in the prevalence rate of mental retardation. A comparison of the high rates quoted in 1953 with values reported in 1981 is difficult because the cut off in 1953 was an IQ of 75 whereas in 1981 a cut-off IQ of 70 was used. Some of the probable reduction in prevalence lBay be due to better perinatal care. Other aspects may reflect social cnanges~ fewer consanguineous marriages and few children to older mothers, leadinK to a reduction in Down's syndrome in Japan.
Uther countries have yet to gather data to evaluate the effectiveness of their own preventive programmes. Nearly all the countries/areas in the Region report the preventive role played by maternal and child health through their family planning programmes, antenatal and postnatal care (with particular emphasis on reducing kernicterus in some countries). their immunization programmes and the regular developmental assessment of infants. In some countries like Australia, New Zealand and Japan, comprehensive neonatal screening, iacluding screening for biochemical defects, is done routinely. The need for neonatal screening for preventable medical diseases causing mental retardation, such as hypothyroidism was also mentioned by a few of the developing countries. Genetic counselll.ng is reported as avail.able in many of the countries or areas in the Region, e.g. Australia, China, Hong Kong, Japan, New Zealand, Republic of Korea and Singapore. This list is not to be considered complete but is given to show how widespread genetic counselling has become.
Most of the countries or areas reported that attempts had been made to improve the psychosocial milieu in the Child's life through both general methods aimed at raising the standard of living and quality of life of the community/society as well as more specific methods like early stimulation programmes. The control of narmful physical and chemical agents in the environment is considered important. The prevention of accidents in childhood is another area of concern mentioned in several of the country profiles.
- 4 -
3.5
Care, education and rehabilitation
This was frequently reported as being snared between governmental and nongovernmental organizations. Many of the countries/areas reported having special classes (in normal schools) or special schools. The special classes tend to be for the mildly mentally retarded children without behavioural problems, whereas the special schools cater more for the severely retarded children and the mildly retarded children who l,ave behavioural problems. There is a tendency towards integration into the normal school system, especially in the developed CQuntr.l.es. On tile
whole such speclal education facilities
are inadequate both in the number available and in their quality and range. Pre-scllool and day-care nursery facilities are available in many
countries. Involvement of the mother and improving the skiU. of the teacher are considered to be essentlal. However, such facilities are still insufficient in number and quality in nearly all the countries. Concern about the laCK of coordination of the special educational facilities was expressed by a number of the country profile. Apart from special classes and special schools, the shortage and poor quality of workshops (both sheltered and 'open'), activities/treatment centres, and residential homes fo,· mentally retarded adolescents and adults were reported by most of t~e country profiles. While some members of tne group accepted the concept of de-institutionalization, integration into the community and normalization as vital to the best interests of the mentally retarded person, serious concern was voiced about the lack of supportive services to make the concept work effectively. On top of this was seen the need for better coordination of the various parts of such a programme. ~ith the phasing out ot the psychiatric hospitals and other essentially institutional facilities for people with mental retardation, the need for small purpose-built residential facilities, particularly for severely and profoundly mentally retarded persons, was recognized.
The shift towards community-based group homes was reported. Mention waS made of the importance of allowing the mentally retarded people themselves to have a say in What they want and how they would like to run such facilities. The need for more advocacy, guardianship and legislation for the protection of the rights of the mentally retarded person was seen as desirable and deserving of close attention.
4.
TECHNI~AL
PRESENTATIONS
4.1
Epidemiology
Methods for the epidemiological study of mental retardation were described. It was noted that these research teChniques could be successfully implemented within the resources currently available in
- 5 -
developing countries. These research strategies include testing the validity, sensitivity and specif~city of screening instruments for the detection of neurological disease, prevalence surveys, case-control studies to identify risk factors, and prospective community trials to measure the efficacy and safety of intervention programmes. It was emphasized that the aim of this approach and the series of studies is the development of a rational programme of disease prevention and control. it was stressed tnat the cost to benefit ratio of research in developing countries should be considered. It was noted that countries must make their own decisions with regard to choosing priorities. However, in both developed and developing nations, most have found it helpful to carry out research efforts, provided they are practical, relevant to the health problems of the country, and within the constraints of available resources. Neurolog~sts in developing countries have taken a very positive attitude to research. They take pride in work which is well done; they are able to make a meaningful contribution to the health of their countrymen; and tney feel that time spent in research is at least as useful as their clinical care act~vities. It was stated that the programme has already been successfully implemented in Chile, China, Ecuador, India, Italy, Mexico, Nigeria, Peru, ttle United States and Venezuela. The need for uniformity of methods and diagnostic criteria was stressed in order to compare result. from study to study. The presentation of the consultant on this subject is attached as Annex 4. ~.2
Development of serVLces for the mentally retarded
The paper presented by the consultant first considered the Objectives of services and then looked at how services had started, usually as small special schools and initially as the result of activities of voluntary groups, in several South Pacific areas. The problems and difficulties that had been encountered were discussed. What governments might do to promote the activities of small voluntary groups was described. Constraints likely to impeae the establishment of services were listed. Finally, the paper presented an overview of what services could be provided for mentally retarded persons. The presentation by the consultant on this subject is attached as Annex 5.
S.
PRIORITY AREAS FOR INTERVENTION
5.1
Introduction
Participants were divided into two groups for small group discussions. The members of each small group were as follows:
- 6 -
II M£MB£RSHIP OF SHALL GROUPS A
B
Prevention of MEMBERS Temporary advisers mental retardation
Community care for mental retardation Dr Wai Hoi Lo Dr Brother Andrew Dr M. Hong Dr J .0. Miller Professor Tao Kuo Tai DI T. Yamagami Dr John Price Dr Dr Dr Dr Hu Ching Li G. Nugroho Wang Liansheng N. Shinfuku
"
Professor Guo Di Dr H. Arima Dr D.H.G. Beasley Dr M. Haq Dr H. Seino Dr F. Solon Dr Wong Sze Tai Dr Bruce Schoenberg Dr N. V. K. Na ir Dr T. OlaKowski Dr T. Umenai
II
Consultants Advisers
Dr Guo Di was appointed Chairman for Group A and Dr Wai Hoi Lo for Group B. L1kewise Dr Haq was appointed Rapporteur for Group A and Dr M. Hong for Group B. 5.2 Prevention of mental retardat,on
The following [lVe areas were given high priority for prevention activities: use or development of simple screening tools; use or development of simple diagnostic instruments; identification of mild mental retardation and reduction of its psychosocial causes; recognition and reduction of preventable bio.medical causes of mental retardation; and rapid assessment of neurotoxin contamination of the environment leading to encephalopathies.
5.2.1 ilevelopment of simple screening tools for identification of mentally retarded individuals in the community
(a)
Situational analysis
Mental retardation appears to be a major health problem throughout the degion. Some countries currently have adequate screening tools, Whereas developing nations need simple instruments which (il can be applied by community workers, and
(ii) are appropriate to national needs within the context of available resources. Such instruments are essential for measuring the magnitude and distribution of mental retardation.
- 7 -
(b)
Objectives and targets
By screening a community, to identify mental retardation at an early age SO as to provide support, services and intervention as soon as possible. Separate items of the screening instrument are required for different age groups (e.g. neonate, infant, pre-school child, child at primary or secondary school, and adolescent). (c)
Steps to be taken The WHO Regional Ofiice for the Western Pacific should obtain consultant(s) to
e~pert
(i) Recommend or develop such an instrument where necessary or adopt or modify any of the instruments available to suit local needs. These could be tested for sensitivlty, specificity snd validity in designsted centres and must be of a reasonable standard to allow comparison of results elsewhere WIthin the community or the Region. (iil Development of such instruments should take into account the ability of available lndividual. to use this instrument, preferably the primary health worker, the midwife, or the parents. (lli) The trainlng of these personnel to provide services for those diagnosed as having mental retardation should be simultaneous with the development of the screening instrument. 5.2.2 (a) DevelOpment of simple diagnostic tools for children with mental retardation
Situational analysis
While the developed countries in the Region are famillar with such ins truments J other countries currently require appropria te simple) ine~pensive and reliable diagnostic tooLs. tb) Objectives and targets
The objectives need to be within the context of national policies and priorlties in any health delivery system. Whereas sophisticated tools could be useful in basic research and the solution ot complex problems (associated with or causing the mental deficiency syndrome), efforts in developing countries could be effectively and economically dlrected at establishing the diagnosis of mental retardation, preferably at very early stages in life. The specific target groups identified are the neonate, infant, and the pre-school child. \c) Steps to be taken (i) EducatlOn of the mldwife or midwlieequivalent, the health worker and the parents to seek assistance from the appropriate agency or personnel with expertl.se in this area. Special school teachers and SChool health service personnel could playa vital role.
- 8 -
(i,) Recommend or prepare simple manuals for this purpose which could be easily understood and applied by midwives, health workers, parents and teachers (the last two groups interacting during educational classes for affected children in kindergarten and at the early primary school level.) (,ii) A manual with clear operational procedure will be designed specifically for each category of health-care personnel, parents, and educators; the instructions will be tailored to address local needs. 5.2.3 Mild mental retardation (aJ Situational analysis
The recognition of the importance of psychosocial factors is an especially important area of concern in identifying persons with mild mental "socio-cultural" retardation. This area involves community development, social norms, cultural sensitivities and
situation of adversity (e.~. chronic illness, poverty, poor housing, poor motnering or parenting, ineffective or disruptive child rearing practices due to lack of suff,cient education in responsible psrenting, etc.) (bJ OOJect,ves and targets
I'
To reinforce the positlve values cherlshed in the native culture and religion in order to minimize where possible the impact of socio-economic disadvantage in society. To seek measures whereby the environment will be improved. Specific target groups include; \1)
Children with aural and visual
d~sabilities
or with chronLc
illnesses which might contribute to mental retardation. (iil "Slow learners" - to identify tne type of disability contributing to this condition/state. (ii,) Families or motners, in particular, with emotional problems related to ~nvironmental distress - crowded and poor housing, large families, poor nutrition, etc. (c; Steps to be taken
(,) Identify and treat as early as possible children witn aural or visual deficits or with cnronic illness. (,i) Promote education geared towards tne possible reduction or eradication of psychosocial factors associated with mental retardation by providing public heslth education at the primary health care level; and - by teaching the benefits of health in scnool curricula so
that the child is conscious of his/her'responsibility to the parent. in return evoking maternal care and concern;
- 9 -
liLi) ~ducate the expectant mother on the values of nutrition and the dangers of alcohol, drugs, and smoking and teach mothers the positive values of good mothering - breast-feeding and loving care. (iv) Incorporate these concepts into national family development progr8lllDes. (v) 5.2.4 Study and implement ear ly ch ildhood enrichment progranmes.
Biomedical causes of mental retardation (a) Situational analysis
The participants identified putative factors responsible for or contributing to mental retardation and listed areas for primary and secondary prevention activities, which could be identified as priority areas. These are as follows: (i) (iL) (iii) (iv) (v) (vi) (vii) (vlii) (ix) (x) (xi)
Improved prenatal care - prevention of pre-maturity Special care for the premature infant Prevention of kernicterus (identifying those with G6PD and significant blood group incompatibility) Newborn screening for congenital hypothyroidism Rubella immunization improvement of health and nutrition Recognition and treatment of centrol nervous system infections Recognition and treatment of age-dependent epileptic encephalopathies Reduction of childhood accidents Reduction of child abuse and neglect Genetic counseilin~
(xii) (xiii)
Counselling and education to restrict pregnancy to ages 2ll-35 AmniocentesiS in circumstances of advanced maternal age for the prenatal diagnosis of trisomy 21, where there is a potential for pregnancy interruption
(xiv)
Alcohol counselling, reducing exposure to Pb and screening of newborn infants for treatable inborn errors of metabolism e.g. phenylketonuria and carrier identification in genetic conditions to allow counselling Heduction of exposure of the pregnant mother to toxic agents (chemical, radiation, etc.) which might affect the fetus.
(xv)
- 10 -
(b)
Objectives and targets
Prevention is an important component in the health status of a population. Mental retardation, if undetected early, can be a major problem contributing to morbidity in a developing society.
Target groups identified are mothers in early pregnancy, neonates in distress (as a result of protracted labour, antepartum hemorrhage, etc), neonates with a low Apgar score, and infants exposed to factors mentioned in the section 5.2.4 a. Programmes can focus on families from lower socio-economic groups, and nurseries and kindergartens survey the children of such families. In addition, educators, health planners, health professionals and community workers are special target groups for education regarding risk factors or preventable causes of mental retardation. (c) Steps to be taken (1)
Simple biological tests which are readily available. Support services to departments of obstetrics and paedlatrics, especially at the district hospital level where obstetric and paediatric services are available. Closer liaison witn public health professionals and health legis ls tor s •
(il)
(iii) 5.2.5 (a)
Rapid assessment of neurotoxin contamination of the environment Situational analysls
There are occasional outbreaks of encephalopathies, leading to mental retardation and related nervous system disorders resulting from acute contamination of food or the environment by neurotoxic agents (e.g. organic mercury). (b) Objectives and targets
An expert team of consultants should be organized by the WHO Regional Office for the Western Pacific to act when requested by Member States to investigate these outbreaks and provide advice to minimize tbe consequences of the toxin.
(c)
Steps to be taken The
A team of experts should be identified and should meet periodically to review strategies to address these epidemics. team should be available to act on short notlce.
- 11 -
5.3
Community care of mentally retarded people Overriding principles It was agreed tnat tllree princlpies need to be kept in mind: first, there should be the maximum integration of people with mental retardation within tneir communities; second, maximal use should be made of existing resources; third, implementation should proceed gradually, in accordance with local needs and consistent witn levels of community acceptance.
5.3.2.
Prlorityareas
Three priority areas were identihed: first, the development of services and facilities; second, the development of manpower resources; and third, the need to improve the pUblic image of people with mental retardation. 5.3.3. (a) Development of services and facilities Situational analysis
Despite tne fact tnat mental retardation is a major nealth and educational problem within the Region, the provision of services for mental retardation varies Widely. Some countries e.g. Austraila and New Zealand have more developed services, particularly in their more heavily populated areas. Others <e.g. Papua New Guinea) are just developing services. In many nations within the Region, partial development of services nas taken place. Differences reflect varying stages of cultural and economic development, which influence the level ~f goveraaent support and community attitudes. (b) Objectives and targets
Services and facilities for mentally retarded people should be provided in health, welfare and educational fields, tne extent of tnese to depeno on local economic and cultural conditions and on local needs. Targets include existing facilities which could be made available to people (of all ages) witn mental retardation. (c) Steps to be taken
In order to plan the development of services for people with mental retardation, one should consider services and facilities appropriate to different age groups and general services and facilities which apply to all ages. In the fallowing sections, the steps to provide services and facilities for those with mental retardation are put in order of priority within each section. Thus, tne first service described in eacn section would have the first priority and once that service is established, planning for the next service would be initiated.
- 12 -
infancy programme (0-3 years) - Objective. stimulation of infants with mental retardation (1)
early detection and
(1) (2) (3)
&ducation and training of mothers regarding early recognition, early stimulation and enrichment &ducation of health workers and physic4ans to work with parents
, Medical intervention, where necessary, ln particular the optimal control of epilepsy Pre-school programme (4-6 years) - Objective. early training while bringing about the early integration of the retarded child with his non-retarded peers. Allow mentally retarded children access to normal pre-school facilities If (1) is not available, establish tnerapeutic pre-schools for children with mental retardation Special attention to be paid to mentally retarded children within day-care centres School age programme (7-16) - Objective: educatlon, while promoting as much integration as possible Special classes withln existing schools with maximum integration If tnis is inadequate, special schools Psychological services Adolescence (12-18) - Objective: vocational training II
,
(11)
(1) (2) (3) (iii) (1) (2) (3) (LV)
(1) (2)
Vocational workshops should be available for mentally retarded people rtecreation/leisure Ask established natlonal and local sporting bodies to accept mentally retarded people Voluntary organizations can help with recreational and leisure activities
tv) (i)
,~ults - Objective: wherever possible
Full integration within the work-force
Following assessment, admission to the work force; sustaining in the work force. There is need for education of the public, government, employers, unions/fellows, workers and the availability of counselling for the mentally retarded workers themselves
- 13 -
(2) (j)
Monetary incentives to encourage employers to accept mentally retarded workers 'Special factory'/sheltered workshops Collective teams (for agricultural work particularly> Accommodation A spectrum of accommodation should be available.
(4) (vi)
( II (2) (Ji
Home care Day care centres may free family members for employment purposes. These should have activities programme. Short stay (residential) care to ease the family burden and to attend to behaviour or other problems. Short stay psychiatric admissions as necessary Foster care Group living within the community Special residential facilities only for the profoundly retsrded. Consider adapting existing buildings no longer required for their original purpose. Community resources Governments need to augment community resources by giving some support to what co_unities can provide. This recognizes that there are skills which local people will be willing to contribute Education within community organizations (e.g. women's groups) Medical and dental care
(4) (5) (6) (7)
(vii) (1)
(2) (viii)
Since early recognition allows active treatment to COmmence early (e.g. in hypothyroidism) and since untreated conditions may inflict an unnecessary life-long burden on the mentally retarded person and his family, it is recommended that a complete medical assessment be made of every suspected case. (I) (a) (b) (2) Early recognition/treatment through primary health care leading to a medical referral Parental guidance/education
Comprehensive diagnostic serVices linked to lea) at a specialist level, should the local doctor see this as necessary
- 14 (ix) (11 (2) (x) Parent organuations Encourage self-help parent groups to integrate where possible with primary health care facilities From these may develop area and national organizations which can supplement what government programmes can provide Mobile multidLSciplinary team If possible, form a multidiscipl~nary team led by an appropriate medical specialist (psychiatrist, paediatrician or a doctor with special expertise in mental retardation).
Additional members would be a nurse-educator and a teacher (both specially tralned) and a welfare officer. This team would provide advice on all aspects of care and services as
well as providing a management plan for individual problem cases.
5.3.4
Development of manpower resources (a) Situational analysis
AVdllability of manpower varies widely agaln in the Region, but is generally in short supply. In some countries, only untrained layworkers are available. Even in countries where professionals are available, very few of them are engaged in helping mentally retarded people. There is a clear need for more and better trained personnel if the necessary services for mentally retarded people and their families are to develop fully. (b) Objectives and targets Secure manpower of all kinds and at all levels to provide the
necessary services for the mentally retarded.
In addition, one
particular objective is to ensure that some high order expertise exists at a national level in each country.
Target:
existing tral.ning programmes
(c)
Ste ps to be taken
There is a need for recruitment of all levels. However, primary emphasis should be placed on recruiting community resources (e.g. parents and other volunteers, traditional midwives, etc).
Training at all levels sho~ld be provided, but training for personnel from the communlty resource is seen as having priority. At the same time, every effort should be made to develop appropriate skills in existing professionals and specialists. The group also highly recommends tbe creation of high order expertise at national level through technical cooperation. Training of needed manpower can
take place through a variety of mechanisms and procedures as listed below. Steps to be taken for training in each section are put in order of priority
- 15 (i) (1) 1raining Personnel from the Community (parents, health volunteers, home visit aides, traditional midwives, others) (a) (b) (c) (d) (e) (2) Train~ng
for parents of mentally retarded children (by primary health workers)
Information for parents of mentally retarded children (through primary health workers) Training of health volunteers Child-to-child programme: relating a mentally retarded child to a non-retarded child living close-by Information for village committees (this may facilitate recruitment); also information to other local groups
Non-specialized professionals (e.g. nurses, health workers, teachers) (a) Pre-8ervice (during their own professional training)
There is a general need for more comprehensive professional training concentrating on early recognition and appropriate referral, management issues snd working with parents and other community personnel. (b) In-service and continuing education through professional/specialist services. In addition, opportunities should be created 80 as to allow Bome personnel to proceed to a specialized career in mental retardation. (3) Specialist re~ources (paediatrician, psychiatrist, neurologist, psychologist, special educator, speech therapist, occupational therapist, physiotherapist) (a) The need for more comprehensive specialist training in mental retardation through the existing educational systems, which, as a rule, tend to neglect mental retardation The need for continuing education directed towards mental retardation in all relevant specialist areas. The creation of opportunities for the development of high order expertise (possibly overseas, or by bringing in overseas expertise as an educational resource) through technical cooperation programmes.
(D) (c)
- 16 -
5.3.5
Improving the public image (a) Situational analysis Mental retardation carries a stigma for retarded people and their families. As a society becomes more competitive, literate and technological, this stigma may worsen. There are many myths and misunderstandings and much magical thinking about mental retardation. Parents often feel guilty or ashamed about their retarded child. This guilt (or shame) may be professionally induced. Teasing of mentally retarded children by other children is commonplace. There is often a fatalistic attitude that such sub-human beings will not respond to training and that any time directed at helping them is time wasted. (b) Objectives and targets lmprove the image to the point where mental retardation is not shameful and there is no need for concealment, where people with mental retardation are seen as human, are accepted and enjoy normal human rights. Improved attitudes should lead to the recognition that those who work with mentally retarded people are seen as doing a worthwhile job. Dispel fatalistic attitudes by demonstrating the achievements which people with mental retardation are capable of. (c) Steps to be taken (1)
II II
II
II
"
Publ1c education through all channels empha.i~ing the achievements of mentally retarded people, in positive terms, and the benefits of education and therefore the value of facilities Counteract misinformation. Establish a National Week/Year of Mentally Retarded People Establish a WHO Year of Mentally Retarded People
(2) (3) (4)
6.
SPECIFIC TOPICS
6.1
Neurosciences Programme
A review of selected aspects of the WHO Neurosciences Programme within the Division of Mental Health was presented. It was stated that the neurosciences programme is a relatively new area within WKO, but despite this has already developed a large number of activities, including standardized protocols for prevalence surveys, case-control studies, and
intervention trials to test the efficacy and safety of control and prevention programmes. Such studies concentrate on commonly occurring, debilitating diaea.ea of the nervous system such as epilepsy, cerebrovascular disease, severe mental retardation in children, peripheral neuropathy, extrapyramidal disorders and brain injury.
- 17 -
6.2
Publ,c education
It was observed that one of the hrst needs is to find out what the public believed about mental retardation, in particular the myths that relate to it. Although information can improve public knowledge, attitudes are more resistant to change. There has in the past been a fatalistic attitude towards mental retardation. However, the development of expectations that western technology can cure every known problem, including mental retardation, has also to be guarded against. The use of two powerful resources available to health educators - education in schools and the media - was stressed.
In discussion, it ~as mentioned that if a prominent person with a retarded child was willing to come forward and say so, this could have a considerable and positive im~acL. There was some discussion about the stigma attached to the term 'mental retardation'.
0.3
Eoucation and training
The group noted that the term 'education' is used to refer to those activities which are designed to develop the capacities of people with mental retardation and 'training' to programmes des igned to develop the skills of people working with them. It was observed that the development of manpower at the coumunity level should be the initial and major focus of activity. However, the development of skills with.n main line services and specialized services should proceed concurrently.
b.4
Autistic Children The presentatlon on autistic cnildren was based on experiences In the
Republic of Korea where children with autism seem to be as prevalent as in any western country; despite the prevalence (5-10 per 10,000 children; 12% of child psych,atry outpatients), no recognition of and attention to tneir special needs had been given. It was emphasized that autistic children cannot be effectively helped unless their characteristics and their need for special management techniques are recognized. It was urged tnat special attention be paid to autistic children when any country tri.es to establish comprehensive prograumes for people with mental retardation. 6.5 Collaboration with nongovernmental organizations
It was observed that the prevention of mental retardation and the better use of resources for people with mental retardation requires cooperation at many levels and internat,onally between United Nations agencies and nongovernmental organizations. The Group observed tnat the cooperation that exists internationally between the International League of Societies for Persons with Mental ~andicap (ILSMH) and the United Nations agencies in Geneva should now be developed at the regional level so that joint discussion, consultation and planning may take place resulting in more effective implementation of programmes and better utilization of resources within the Western Pacific Region of WHO.
- 18 -
b.b
Early intervention
It was stated that early intervention includes a variety of activities which can be generally described as involving the stimulation and training of infants and children. Programmes of early intervention generally concentrate on the areas of social. cognitive and motor function. It was agreed that such programmes should be developed to meet local needs and should be capable of implementation in a wide variety of situations.
The discussion centred on the parallel development of a simple screening tool which could be used at community level and which could be useful in identifying those children considered to exhibit the particular characteristics of mental retardation. The opportunities for collaborative study and development of both types of instruments were discussed and accepted. 6.7
t:pi lepsy fhe Group noted that a considerable number of children with mental
retardation may also have various types of epileptic seizures
t
and a
majority of them be classified as secondary generalized epilepsy. The importance of early detection and appropriate management for specific age-dependent epileptic encephalopathies was emphasized. It is generally agreed that children with secondary generalized epilepsy with onset in infancy or in early childhood have a higher prevalence of mental retardation. In West's syndrome (infantile spasms) mental retardation is founrt to be present in 68.3% of the cases, while .n Lennox-Gastaut syndrome it occu~s in 90.6% (Ishida, et al, 1984). In eplleptic encephalopathies, either diffuse or multif~dysfunction manifests itself as both epileptic seizures and mental retardation.
7.
RECOMMENDATIONS
L. The Group confirDlS that mental retardation is a major, but neglected, health, educational and social problem throughout tbe Region. It includes a w1de variety of conditions and degrees of handicap necessitating a comprehensive range of programmes.
The Group therefore recommends that WHO should further develop programmes on mental retardation in collaboration with Member States. 2. The Group recognizes that the problems of mental retardation transcend individual disciplines and recommends that WHO should urge each Member State to establish and organize a single national coordinating body with membership from governmental and nongovernmental agencies for the coordination of mental retardation programmes. Such a body should examine the need for legislation or legislative changes to ensure that people with mental retardation are protected legally.
- 19/20 -
3. The Group affirms tnat people with mental retardation are best cared for in the community and therefore recommends that WHO sho~ld seek to collaborate witn Member States in maintaining and promoting tne integration of tne mentally retarded within tne community. It recognizes the vital role of parents and families in community care and recommends tnat provision should be made for fam~ly support in tne development of community programmes for people witn mental retardation. 4. The Group recognizes that the prevention of mental retardation and services for tnose with mental retardation are not given due attention in primary health care. The Group recommends that WHO snould collaborate with Member States in developing training for primary health care and rehabilitation workers to improve their skills in caring for people with mental retardation. 5. The Group also notes that sufficient consideration is not accorded 1n the training/education of professional and non-professional nealth workers in relation to mental retardation. The Group therefore recommends that WHO should urge Member ~tates to incorporate such training into educational curricula. The Group also notes the necessity for and usefulness of national/regional workshops, exchange programmes and fellowships in the field of mental retardation and recommends the continuation and expansion of these activities. 6. The Group recognizes the lack of scientific studies with regard to the magnitude, distribution, causes and management of mental retardation within the nations of the Region. The Group therefore recommends that WHO should develop and support studies to address these needs. 7. The Group notes that mental retardation occurs in association with other disorders of the central nervous system. The Group, therefore, recommends that the Western Pacific Regional Off~ce of WHO should develop active programmes in the area of neurosciences witn special attention to commonly occurring debilitating neurological disorders such as epilepsy. 8. The Group realizes that regional expertise for training and research 1n mental retardation is scarce. The Group therefore recommends that WHO formal collaborative arrangements should be developed with appropriate centres, including nongovernmental organizations concerned with mental
retardation. 9. The Group recognizes that certain forms of mental retardation are preventable with currently available knowledge and technologies. The Group, therefore recommends that WHO, in collaboration with Member States, should develop programmes for prevention and systematically monitor/evaluate the implementation of such programmes, with some reference to cost-benefit. lU. The Group recognizes that public ignorance and negative attitudes regarding mental retardation often exist. These impede the development of services for the mentally retarded. The Group recommends that Member States should be urged to develop public awareness to counter existing 19norance and negative attitudes and to promote appropr~ate preventive and treatment programmes.
- 21 -
ANNEX 1
OPENINb SPEECH OF THE REGIONAL DIRECTOR AT THE WORKING GROUP ON MENTAL RETARDATION MANILA, 18-22 FEBRUARY 1985
Distinguished Participants, Ladies and Gentlemen, It gives me great pleasure to welcome you today to the WHO Regional Office for the Western Pacific to take part in the Working Group on Mental Retardation which is being held here from 18 to 22 February 1985. For ,nany years now, WHO, in collaboration with the United Nations, its specialized agencies, and nongovernmental organizations concerned with the
plight of the mentally retarded, I,a. been involved in the work on mental retardation. The Iwenty-elghth World Health Assembly in 1975 considered ttlat ttle World Health Organization should in the future devote a significant proportion of its attention and resources to this problem. Resolution WKA28.57 adopted at this World Health Assembly in particular noted that: - according to presently available knowledge, mental retardation can affect up to 3~ of a population; - methods are already available for preventing some types of mental retardation especially in children, and - techniques are available for overcoming or minimizing existing handicaps in many instances to an extent where the individual may become self-supporting. The Thirtieth World Health Assembly in 1977 adopted another resolution on mental retardation urging Member States to accord adequate priority in tneir health policies and development plans to actions that would prevent mental retardation and provide necessary care and support for mentally retarded individuals and their families. I might add, in this respect that the Australian and New Zealand bovernments played an active role in the adoption of this resolution. The report by the Director-beneral on mental retardation during the World Kealth Assembly in 1977 set new directions for the Organization to follow on this issue. Priority is being given to activities conducted within existing services and to interventions concerned with children. Simple methods of detection and care, which can be used by public health nurses, auxiliary health workers and parents, are being stressed. Improved ante-natal and natal care, the control of infectious diseases, and adequate nutrition in early childhood, combined with health education of parents, are seen as the most effective preventive measures. National commitment is considered a key to programme development.
- 22-
Annex 1 In spite of this, as you will be well aware, programmes for the retarded receive low priority in many countries of the world. Various constraints have continued to hamper the development of programmes on mental retardation: scarcity of resources, lack of coordination between the health, education and social welfare sectors, lack of relevant data and appropriate skills, and the stigma traditionally attached, to mentally retarded individuals, among others. In this connection, the working group which is now being convened provides a valuable opportunity to bring together experts from different backgrounds in the Region to discuss ways and means of developing regional and national strategies on mental retardation. 1 look forward therefore to receiving the report on your deliberations, which will form the bas is of the programmes on mental retardation in the Region.
~entally
To conclude, let me express my sincere thanks to Dr John Price from Australia and Or Bruce Schoenberg from U.S.A. for their contributions as wnO consultants to the organization of this meeting. I would also like to extend my warm welcome to our distinguished colleagues from the Region, who are participating in this meeting as temporary advisers. l wish you all an enjoyable stay in Manila.
- 23 -
ANNEX 2
LIST OF MEM8ERS, CONSULTANTS AND SECRETARIAT l. MEMBERS
Dr IIrother Andrew Specialist Medical Officer Department of Health P.O. Box 1239 Soroko, Port Moresby Papua New Guinea Or Masataka Arima Director Divis~on of Mental Retardat~on and Birth Defect Research National Center for Nervous, Mental and Muscular Disorders Ugawahigashi 4-1-1, Kodaira Tokyo 187 Japan Jr D.M.C. Beasley Director
Tne New lealand Institute or Mental Retardation P. O. Box 1063 Well ington New Zealand Professor Guo Di Shanghai Second Medical College Shanghai China Dr Syed Hazharul Haq Professor of Psychiatry Faculty of Medicine Universiti Kebangsaan Malaysia Jalan Raja Muda P.O. Box 12411.
Kuala Lwapur Malaysia Dr Kang-E Michael Hong Director and Associate Professor Division of Child and Adolescent Psychiatry Seoul National University Hospital 28 Yungundong, Chongroku :;"oul Republic of Korea
- 24 -
Annex 2
Dr Wai Hoi Lo Consultant Psychiatrist Mental Health ~ervice Hong Kong Psychiatric Centre Dav id Trench Rehab i l itation Cen tre 91! Bonham Road Ilong Kong Or J.O. Miller Principal Cumberland College of Ilealth SCLences E.as t S tree t
Lidcombe New South Wales 2141 Au. tralia Dr Masakazu Seino Medical Director National epilepsy Center Shizuoka Higa~hl Hospital Sllb UruBlliyama SIt izuoka 420 Japan Or Florentino Solon Deputy Minister for Nutrition and Family Planning Hinistry of Health San Lazaro Compound Sta. Cruz
Manila Philippines Professor Tao Kuo Tai Director
Institute of Child Hental Health Nan jing China Dr Wong Sz e Ta i Head Chlld Psychiatric Clinic Singapore Republic of Singapore
Dr Toshiko Yamagami Chief Center for Emotional and
8ehavioural Oisorders Hizen National Mental Hospltal Kanzaki, Saga-ken 842-01 Japan
- 25 -
.'\nne" 2
2.
CONSULTANTS
Dr John Price Head Department of Psychiatry University of Queensland Royal Brisbane Hospital Brisbane, Q. 4029 Australia Dr Bruce Schoenberg Chief, Neuroepidemiology Branch National Institute of Neurology and Communicative Disorders and Stroke (NINCDS) National Institutes of Health Roo. 804, Federal Building 7550 Wisconsin Avenue Maryland 20205 United States of America 3. SECRETARIAT
, I
Dr N. Shiofuku (Operational Officer) Regional Adviser in Mental Health and Drug Dependence WHO Regional Office for the We6tero Pacific Manila
Dr Hu Ching Li Regiooal Adviser 10 Maternal and Child Health WHO Regional Office for the Western Pacific Manila Dr N.V.K. Nair
Regional Adviser in Nutrition WHO Regional Office for the Western Pacific Manila
Dr G. Nugroho Medical Officer Priaary Health Care WHO Reg10nal Office for the Western Pacific Hanila
- 26 -
Annex '2
Olakowsk i ruegional Adviser in Communicabl~ Diseases ',o/HO Regional Office for the Western Pa.;:ific ,'ian i la Or
r.
" II
Dr T. Umenai Reglonal Adviser 1.0 Lommunicable Diseases WHU 1legionai Office for the Western Pacific Manila Or Wang Liansheng Regional Adviser in Organization ot Hedl.cal Care "tiO 1legional Office for the Western Pacific Manila
II
II II II I,
\'
- 27 -
ANNEX 3
COUWTRY PROFILES
TAe following profiles were presented. Copies of tne papers presented caD be obtained fro. the authors whose addresses are listed in Annex 2. AUSTRALIA
Country profile CIUllA
Dr J.O. Killer
- EpiQeaiological studies aDd existing care. education and rebaailitatioD service. for ttle _tally batldicapped ill tne People's Republic of CbiDa - Paediatrician'. view IIONG IWNG
Prof... or tao Kuo-Tai Profes.or Guo Di
Services to tbe mentally retarded in Hoq Kong JAPAJI
Dr Wai Hoi 1<>
Country prof1le~ aButal recardatiou in Japan Country profile\ Mental retardation and epilepsy Outlines of education and renabilitation for mentally retarded cn ildren in .J.paD IW..4YSIA Pursuits and priorities in the lUIlaa-eat of tbe _acally retarded peraORe iD MalayeiaCouDtry report IIlIW ZEALAND
Dr K. "rima
Dr M. Seino
Dr T. Yalll8aallli
Profe •• or Syed Maznarul Haq
Country profile PAI'IIA NEW GUXIIIA Country profile PHIl.IPPlNES Country profile
Dr D.H.G. Beasley
Dr Brotner Andrew
Dr
Flor~tino
Solon
- L8 -
.mnex 3
REPUBLIC OF KOREA
Mental retardation in Korea SINGAPORE
Dr
Kan~-E
Michael lIong
Country proble SOUTII PACIFIC
Dr Wong Sze Tai
Some characteristics of mental retardation in the South Pacihc
Dr John Price
ANNEX 4
STRATEGIES FOR ePIDEMIOLOGICAL STUDIES OF MENTAL RliTARDATlON IN DliVELOPING COUNTRIES
by
Bruce S. Schoenberg, M.D., Dr.P.H.
ABSTRACT
An efficient and effective strategy was designed which employs lay health workers to screen populations in developing countries for the presence of neurological disease, including mental retardation. Diagnoses are tnen confirmed by a neurologist. Data derived from such studies can be utilized to determine disease frequency and serve as a basis for rational health care planning. Case-control approaches can be carried out in these same populations to identify risk factors for neurological disease. These results can then lead to progralDllles for control and prevention of these dlsoraers making maXimal use of lay health workers.
- 30 .-
Annex 4 LNTrl.OOUCT ION
Studies ot the epidemiological aspects ot neurological disorders have rarely been carried out in developing countries because of the many
formidable problems which investigations of this type entail.
The chief
difficulties in implementing such surveys are that accurate or current
census data may not be available, and the number of physicians with expertise in clinical neurology may be limited. vespi te these major challenges to the succ"ss ful implementation of neuroepidemiologica 1 studies in developlng countr les, th is area of research
can be especially valuable.
These investigations proviae data needed to
estimate the magnitude of specific diseases, thereby allowing for more
effective health care planning. At the same time, research approaches can be designed to identify risk factors for neurological diseases in ~ell-defined
populations, thereby offering a rational basis on which to design progra~ues for disease control and prevention. Neuroepidemiological studies have the additional advantage of not requiring expensive equipment 0r elaborate tecnnology. Such research can be carr led out with the resources currently available in most areas of the world. A specific strategy, making maximal use of lay health care personnel, was therefore specifically designed for surveying populations in developing countries. SPECIFIC CON~IDERATIONS
IN EPIDEMIOLOGiCAL STUDIgS OF MENTAL RETAKDATION
The first essential element in designing a community investigation 1S to define t.he cundition. M.ental retardation nas generally been defined on
the basis of three criteria: (1) subaverage intellectual functioning; i.e., with an intelligence quollent (IQ) under 70; (2) deficits in adaptive behaviour; and (3) an age of onset under 18 years. The first two criter1B must be translated into operational measures which can be employed in field investigations.
Intelligence tests Measuring inrelligence is a complex issue dnd involves mUltiple
dimensions.
A great deal of work has gone into the development of Uniform procedures should prevail when
"standardized test instruments ll •
testing an indivldual to better compare the individual's performance against established norms that have been derived under similar conditions. The scoring of such tests is based on the assumption of a normal or r.;aussi.an distribution of "intelligence". Unfortunately, there are multiple problems with the implementation of these test instruments. What may be considered an important dimension of "intelligence" in one society may have no practical usefulness in another
cultural setting.
Altnough test scores can be mathematically adjusted to epidemiolo~ical
achieve statistical equivalence, scores derived from different cultures may not be comparable. The overzealous reliance on numerical scores derived
from IQ tests in describing the
patterns of mental Standardized IQ testing
retardation has come under considerable criticism.
instruments pose a number of additional problems as well.
It is difficult
- 31 -
Annex 4 to measure intelligence in children less than 2 or 3 years of age. Uniform procedures must be used when testing an individual for comparability with established norms. This is not always possible, especially under field conditions. Some of these tests are not accurate for moderate to severely retarded individuals. Test scores only reflect present performance. They do not perfectly predict, or at times even closely predict future potential.· Some take hours to complete; others require a trained professional to administer the test. Most of these standardized tests are impractical for screening large populations and are difficult to implement in community surveys. Furthermore these instruments have not generally been standardized for populations in developing countries. Transcultural and international validity has not been determined. Consequently, these tests do not currently appear to represent a feasible mechanism to evaluate the epidemiology of mental retardation in developing countries. Checklists and rating scales of adaptive behaviour There are a number of such instruments currently available for the measurement of functional skills. These checklists or test items identify currently observable behaviour. Most of them require little time and training to administer. Most yield easily quantifiable data. They can generally be applied by lay health workers and hence may be employed as a screening instrument to identify those likely to have mental retardation in the population. Theae instruments can also be used to measure the impact of treatment interventions by assessing functional skills before and after the introduction of a specific therapeutic modality. In addition, the checklists can serve as a guide to the choice of an appropriate educational strategy to improve function despite the presence of a fixed deficit. Although functional scales may appear to measure similar behaviours, in different cultures these behaviours lnay require different mental capabilities. One's ability to feed oneself depends upon the nature of the food consumed in the society and the utensils used for feeding. Is the food hot or cold? Is it solid or liquid? Is it possible to eat using only the fingers? Although such rating scales may be useful in demonstrating patterns of <llminished function, they cannot be used to obtain absolute measures of prevalence for cross-cultural comparisons. Before such instruments can be utilized for population screening, they must be tested for validity, sensitivity, and specificity as described later in this report.
CAUSES OF MENTAL RETARDATION Zigler l addressed the fact that mentally retarded individuals are a heterogeneous group. liis theory is based upon a polygenic DIOdel of intelligence whiCh assumes that intelligence is a result of a number of discrete genetic units with lQ distributions falling between 50 to 150. An ind1vidual with an IQ of 50 represents the lower end of the normal distribution of intelligence but is nonetheless a manifestation of the available genetic pool. Individuals with an IQ of 50 are as integral a part of the distribution curve as are those members of the population whose IQs are viewed as superior.
- 32 Annex 4 There are other individuals whose IQ scores are below 50 who comprise the second group of mentally retarded; namely, individuals who have identified genetic or organic defects. This second group represents all those individuals whose intellectual functioning reflects factors other than tne normal polygenic elements. Zigler's model underscores the notion that the mentally retarded are a heterogenous group of individuals, who perhaps can be conceptualized as representing two rather broad, yet distinct groups: individuals who are of low intelligence due to probably cultural and familial factors and other individuals who have identifiable physiological defects. Cultural and familial mental retardation Approximately 70 to 80% of mentally retarded individuals have mild to moderate retardation witn no known specific genetic or physiological impairment. There are several criteria by which an individual is Judged to be classified 1n this category. The most obvious is that the individual functions at a retarded intellectual and adaptive level. Second, there must be eviden~e of retarded intellectual functioning in the immediate or larger family. Third, there must be no clear indication of a cerebral pathological condition. Finally, the child's background will usually be impoverished, with substandard education, housing and medical care. There may also be, but not necessarily, a history of prematurity, frequent infections and accidents, but none serious enough to account alone for the child's slow intellectual and adaptive development. Thus, a diagnosis of retardation due to psychosocial disadvantage rests chiefly on the absence of neurological symptoms and primarily on family background. There is a strong connection between poverty and cultural-familial retardation. Inadequate nutrition, exposure to toxic substances such as lead, and bacterial and viral infections are frequently found among the poor. Not only are poor children exposed to greater health risks, their health is grossly inferior to that of children of sounder economic backgrounds. Poor children also have little exposure to materials that are used in school, and begin school already lacking the resources that prepare them for the demands of formal education. Living conditions of the poor have a number of other consequences on child-rearing, such as raising
children in disorganized, chaotic and crowded conditions, all of Which have the effect of preventing optimal socialization and development. While there is a clear link between poverty and poor intellectual performance and poor adaptive behaviour, the implication that conditions of poverty predispose one towards mental retardation has been critici~ed on the baaia that middle class norms should not be used to evaluate children's behaviour or academic performance. Since it is important to determine whether mental retardation in the community is associated with other specific neurological abnormalities, it is useful to screen for the presence of other neurological diseases when surveying a population for mental retardation. A feasible strategy to carry out such an investigation is described in the remainder of the report.
- 33 -
Annex 4 HETOOOS OF SUItVEVING THE POPULATION
A complete census of the population is f,rst carried out by lay health workers, who also administer a list of questions concerning diagnoses and symptoms of neurological disease. In addition, the lay health workers perform a brief and simple neurOlogical examination. All those who have responses or findings suggestive of a neurological disorder are then requested to participate in an examination conducted by a skilled clinical neurologist, who establishes a diagnosis using defined criteria. This minimizes the time required by the neurologist. The first task in this process is to design an appropriate screening questionnaire and simple neurological examination which can be administered by lay healtn workers but which is very sensitive at identifying individuals with neurological disease. Unless it is possible to study a very large population, it is essential to concentrate on commonly occurring neurological problems (e.g., epilepsy, cerebrovascular disease, mental retardation, etc.). The questionnaire and examination next need to be tested for sensitivity and specificity.2 This is easily accomplished by choosing a group of approximately 20-25 patients for each of the disorders included in the investigation. These individuals can be identified through the records of the participating neurologist(s). In addition, it is also important to have a group of 20-25 >ndividuals who were also evaluated by the participating neurologist(s) and found ~ to have any of the diseases under investigation. Lay health workers are instructed to go to the homes or dwelling units of each of these individuals and to administer the screening questionnaire and simple examination for these patients. The lay health workers are not provided with any information concerning the people they are to interview and examine. They are given preliminary training in the proper administration of the screening questionnaire and examination, however. It is essential that the lay health workers follow instructions explicitly and not interject their own interpretation of methods or responses to questions. This exercise will provide some meaSure of the sensitivity and specificity of the screening instruments in identifying individuals with the neurological diseases of interest. If the screening procedure is inadequate, it needs to be modified and retested in a similar manner. This process is repeated until a suitable screening form is produced. The screening questonnsire and examination are designed for maximal sensitivity, even at the expense of reduced specificity. A low specificity will result in many individuals without neurological disease being seen by the neurologist. The available neurological manpower will therefore dictate tbe tolerable lower limits of specificity.
- 34 -
Annex £.
To date, the Neurosciences Programme of the World Health Organization has (In conjunction with its collaborating centres in Mexico, Nigeria, the People's Republic of China, Senegal and the United States) developed a screening instrument. to identify individuals with the following disorders~ cerebrovascular disease, epilepsy, extrapyramidal disorders (including Parkinson's disease), peripheral neuropathy, intracranial neoplasms, mental retardation (in children), and migraine headache. The next step is to carry out the survey, first in a pilot or feasibility phase and then as a full-scale investigation. The purpose of the initial phase is to tes t all aspects of the survey methodology under actual field conditions. An area with a population of 1,000 - 5,000 individuals is generally chosen for the pilot investigation. The region should have features similar to the area selected for the main survey, but should be far enough removed geographically such that individuals included in the feaslbility phase will not discuss their survey experiences (positive or negative) with individuals to be included in the main study. If many problems are initially encountered this could have a negative effect on future cooperation, and every effort should be made to avoid this situation in dealing with the population covered by the main survey. The feasibility phase should serve to identify unanticipated difficulties and proviae an opportunity in which to test proposed solutions. A critical decision involves choosing an appropriate population for the survey. Members of the group need to be well-defined so that it is absolutely clear who does and who does not belong to the population. The population needs to be large enough, between 25,000 and 50,000 individuals, so that age-, sex-, and race-specific prevalence ratios are based on a
meaningful number of cases. The community chosen for the investigation must be stable, without much migration into or out of the area. Perhaps the most essential ingredient in the successful implementation of such an investigation is community cooperation. Every effort should be made to solicit the support and help of political, administrative and religious leaders a. well as physicians and traditional healers serving the population. Tne area selected should not be unique in terms of the presence or absence of putative etiological factors, for it may be these very factors which are responsible for an observed high disease frequency. Furthermore, the survey area should not be overtly different from other communltles in the reglon. One may choose to evaluate all the inhabitants of a given area, or to apply sampling techniques to select a segment of the population for screening. For convenience in carrying out these studies, there should be a local medical facility available in which the neurologist can evaluate patients. Finally. the major neurological center should be close enough to provide relatively easy access for the patient requiring more sophisticated diagnostic procedures. Implicit in carrying out such a survey i. the availability of and accessibility to neurological care for those identified as having a disorder of the nervous system. Sufficient resources should be provided to guarantee the provision of required medical services ..
·A copy of t.he screening instrument is available hy writing to Dr C.L. Bolis, Neurosciences Programme, World Health Organization, Geneva, Switzer land ..
\
- 35 Annex 4 Before beginning the survey, it is necesssry to hsve a detailed and current map of the area. If this is not available, it may be necessary to prepare such a map. It should contain information concerning natural landmarks (mountains, rivers, etc.), roads, and the location of all dwelling units along each road or in isolated areas. Since roads may not have names and houses may not have identifying number, one must devise a system to uniquely designate a given dwelling unit and a given individual within each unit. This ia conveniently accomplished by first dividing the areas into seg.ents, using natural landmarks (such as rivers) as boundaries. Within each segment, roads are designated by letters ("A", "S", etc.), and dwelling units along each road are designated by numbers. It is useful to organize the research group into a series of teams, consisting of several lay health workers and a supervisor. The lay health workers and supervisors are given 1-2 weeks of training describing the study, their reaponsibilitiea, and the methods to be used for interviews, examinations, and the recording of findings. The supervisors, who are non-doctor health personnel with experience in field studies, are given additional instruction in coordinating their teams, checking the validity and coos is tency 0 f data, and arranging for the neurological examinations. Procedures can be tested during the pilot phase of the study. The investigation proper initially involves a door-to-door survey conducted by the trained health worke~s for the previously mapped dwelling units. All families within each dwelling are defined and each member of a family is given a unique identification number. The household contact involves a complete census, an interview concerning signs and symptoms of neurological disease, and a simple examination. To validate tbe information obtained from the incerv~ew
and
examination, it is helpful to repeat these procedures on a proportion of the population, using other health workers or supervisors. Interviewers requiring addltional help can thus be quickly identified using such a procedure. All persons with signs, symptoms or findings suggestiv~ of neurologicsl disease are requested to have an examination by a neurologist, who establishes a diagnosis using defined criteria. For eligible persons who refuse an interview, a more extensive questionnaire is administered, and the resulting information is reviewed by a neurologist to establish the diagnosis. Whenever possible, the neurologist attempts to contact the persons directly. Since patients witn neurological disease may reside in chronic care facilities, the neurologists should have access to all hospitals, nursing homes, etc. serving the population of interest. The neurologist then directly examines patients or reviews the medical records of all residents of the area of interest who are in the hospital and are suspected of having neurological disease. If there are no hospitals serving the population, this step can be eliminated.
- 36 -
Annex 4 Using tnis technique. it is possible to establish both the number of affected individuals as well as the size of the population at risk and to calculate prevalence ratios. If the data are to be edited or tabulated by computer. it is helpful to document the results of the screening phase and the neurologists' evaluation in duplicate. The original can be retained by the study group. and the copy can be transmitted to the. data processing centre for analysis. The questionnaire and simple examination conducted by lay interviewers also provide an effective screening instrument to determine which individuals in a population need to be evaluated by a neurologist. This approach has already been successfully utilized in the United States 3 • 1n Nigeria4 ,5, in Mexico, Ecuador, Colombia, Peru, India, Venezuela and in the People's Republic of China.
To determine risk factors for neurological disease in the popUlation of interest, case-control 8tudies 6 are then carried out. The cases are designated on the basis of the prevalence survey. Matched controls are selected from that segment of the screened population found to be free of the neurOlogical disorders of interest. This procedure is convenient and minimizes selection biBS in choosing cases and controls. Once risk factors have been identified, rational prevention and control progranunes can be established and tested. Whenever possible. every effort is made to involve the lay health workers in this endeavor. In sU1IIJIary. this approach provides an efficient and effective strategy for (a) determining disease frequency. (b) identifying risk factors. and (c) initiating programmes of disease control and prevention.
- 37/38 -
Annex 4
REFERENCES
1.
Ross, A. O. Psychological disorrters of children: A behavioral approach to theory, research, and therapy. New York: McGraw-Hill, (1980). from stone age to
2. Schoenberg, 8.S.: The scope of neuroepidemiology: Stockholm. Neuroepidemiology 1:1-16 (1982).
3. Anderson, D.W.: Schoenberg, B.S.; Haerer, A.F.: Racial differentials 1n the prevalence of major neurological disorders: background and methods of the Copiah County study. Neuroepidemiolo gy 1:17-30 (1982). 4. Osuntokun, 8.0.; Schoenberg, B.S.; Nottidge, V.: Adeuja, A.: KaLe, 0.; Adeyefa, A.: Bademose, 0.; Bolis, C.L.: Migraine headache in a rural co.munity in Nigeria: results of a pilot study. Neuroepidemiology 1:31-39 (1982) • 5. Os untokun , 8.0.: Schoenberg, B.S.: Nottidge, V.; Adeuja, A.; Kale, 0.; Adeyefa, A.; Hademose, 0.; Olumide, A.; Oyediran, 0.8.0.; Pearson, C.A.: Bolis, C.L.: Research protocol for measuring the prevalence of neuroLogic disorders in developing countries; results of a pilot study in Nigeria. Neuroepidemiolo gy 1 (1982). 6. Schoenberg, B.S.: Hypothesis testing in neuroepidemiology: experiments of nature and experiments of man. Neuroepidemiology 1:85-101 (1982) •
- 39 -
ANNEX 5
TliE DEVELOPMENT OF SERVICES FOR TliE MENTALLY RETARDED
by Or John Price 1.
Objectives
It would be best, 1 think to begin with a statement of objectives. The objective of services for the mentally retarded is primarily to enable each individual to reach his or her full potential. Even if achieved, this will not always be sufficient. Those who are moderately, severely or profoundly retarded may require additional services to supplement what their families or their local community can provide. As far as possl0le (and in most instances, it will he possible), the retarded individual should live as a member of his or her c01lDounity, should be encouraged actively to be involved in that community and should be regarded (and should regard himself or herself) as a member of that coonunity.
It is a great mistake to overlook the considerable potential of individuals and communities to which they belong to cope with problems that arise. Services need to supplement individual and community resources, not replace them. 2. lIow services start: personal experience in the South Pacific
It may be useful to sketch the way that I have seen services for the mentally retarded start and grow in the South Pacific island territories with which I am familiar. These territories frequently have a small expatriate population, in this instance often from New Zealand and Austraiia, and it is from such expatriates that local people have first obtained information on the services provided within these developed countries. From knowledge thus acquired, they have proceeded on a local level to form a voluntary group which has consisted partly but not wholly of the parents of retarded cbildren. From that group may ultimately come the decision that some sort of special school should be establisbed to cater for the training and education needs of retarded children. Such groups may then seek hel p from government departments but often find that ~elp is not readily forthcoming. I think it worthwhile looking at the reasons for this in some detail.
J.
Official and public attitudes,
barriers to progress
In the first place, no single government department is likely to admit responsibility, for the mentally retarded, neither the Health Department nor the Educst10n Department no~ the Social Welfare Department. Secondly, there is a general attitude, wn1ch those seeking help encounter, that noth~ng can u~efully be done for the mentally retarded. As a consequence, help1ng them 18 seen as having very low priority. This attitude accords With a ,ndespread pubhc attitude which is prejudiced against retarded
- 40 -
Annex 5
people and wisnes to keep them out of sight.
In the SOLlth Pacific I have
found this attitude to be more characteristic of urban than rural
populations. The rural cOlmlunity accepts the retarded persons provided his or her behaviour is acceptable. Thirdly, there is a general shortage of resources 1n develop1ng countries and some reluctance to commit available resources to any new enterprise. dowever, to be fair, many people are enlightened and some support,
both governmental and nongovernmental, may be given. There may also be a very useful contribution from international organizations such as the United Nations, the Red Cross, Lions Clubs, Rotary and so on. 4. Needs in the ear ly days
Some sort of service, usually in the shape of a small school, may gradually evolve. The school has several pressing needs: it needs a house, preferably with land around it to allow outdoor recreational activities to take place, important particularly for those children with problems of coordination or mobi~ity. The service needs transport. Transport is a particular problem in some of the smaller island territories where the population lives in chains of village along the foreshore often widely separated. There is, therefore, the need either for a roster of people with private transport of some sort or, as things became more established, the acquisition of a bus. Transport problems are much greater for the retarded than for intellectually normal children. For one thing, since retarded Children form only 1 or 2 per cent of the total population of children of scnool age, the school for the retarded will draw children from a wide catchment area. Some will have motor problems, for example, cerebral palsy, which render them Lmmobile. Thus transportation has high priority if the special school is to prove a viable proposition and this applies also Ln
sprawling urban areas.
A major need is for one or more teachers. A teacher trained at a teacher's tra1ning college will often not be well prepared to teach the retarded. The teacher is probably best trained by gaining in-service experience. Where a service is well established, secondment into the service for training purposes has a lot to recommend it, but it is likely to cost money. This is happening in the South Pacific; for example teachers are now going across from Papua New Guinea to Fiji for training. Part of a teaCher's role will include assessment of new children who may be presented at the centre. Since psychological services are the exception rathe£ than the rule. the teacher will need some training in this area also.
5.
Problem areas
SUCh a small school as I have described often ~as into pr.oblems. Finance LS a major problem since the teaCher's salary and the cost of transport plus a host of incidental expenses will have to be met. Perhaps this i. a problem best addressed by legislative action: for example, by passing laws which affirm the right of the mentally retarded individual to whatever levels of education are the legal right of other children in that country. In this connection, it is worth recalling a WHO report written as long ago as 1954 which affirmed (and 1 quote) that the mentally subnormal child has the right to develop his potential to the maximum. A minor problem is the neglect of paper work of the developing special school leading ultimately to a situatlon of administrative chaos.
- 41 -
Annex 5 I have referred briefly to assessment. This must, of course, include a thorougn medical assessment and, if possible, a visit to the home by a social worker or welfare officer to evaluate the home circumstances. Otherwise a child is likely to be categorized as mentally retarded when the real problem is emotional. Failing this an attempt should be made to obtain some information on the famlly background so as to identify those cases where an emotional problem mignt explain, for example, a child's failure at school. 6. The medical contribution to services
Medical input is vital since otherwise disastrous mistakes may be msde as indicated in the country profile from the South Pacific. This is a sad state of affairs but one for Which the medical profession, because of ignorance or disinterest, must be held largely responsible. If one doctor in a population of say 100,000 was designated as a resource person to whom local groups could run for medical advice regarding retardation problems, he could soon develop some expertise in this area which would reduce the mistakes which will otherwise inevitably be made. 7. How governments can help to get things started, experience South Pacific
This short paper has focused so far very much at the grass roots level. It might be well to summarize what government departments might do to facilitate efforts of voluntary groups where resources do not permit a service to be provided by one or more of these departments. (a) (b) (c) Whatever financial support they can The services of a teacher, or teachers and some help to provide The nomination of a medical officer ,preferably a volunteer) to
l.n-aervice training wh·erever such trainl.ng is available.
act as a resource person to the mental retardation services,
particularly for the screening of new attenders. (d) Advice on basic administration, including case-records, equipment and other registers and bookkeeping. 8. Constraints on the develOpment of services - What are the constraints likely to impede the establishment of services?
(1) The stisma of mental retardation, the shame experienced by parents of retarded individuals and the public attitude that retarded individuals are best kept out of sigh t. (2) the fatalistic attitude wh ich takes ttle v iew that nothing can be done and that education is a wa8te of valuable resources better used elsewhere. (3)
A shortage of expertise at all levels
(4) A lack of financial support and therefore of the means to provide the necessary facilities.
- 42 -
Annex 5
(5) Sometimes, but not always, tne lack of any coherent government policy concerning the mentally retarded. (6) Tne ever-present problem of identifying mental retardation as the responsibility of anyone particular government department. 9.
An overview of possible facilities and assistance that could be provided
Wnat could be offered to tne mentally retarded in the best of all possible worlds? It seems appropriate here to present a brief overview ot some facilities that could be provided. One of the difficulties with the presentation of nis topic is that facilities and assistance can be looked at in a variety of ways. Thus one way to proceed would be to indicate what facilities could be used at different ages, or alternatively, what facilities could be provided for various levels of retardation or by various types of agency - health, education, welfare and voluntary. Perhaps to start by relating facilities to age is the best way to proceed. A. Prescnool~ it seems to be agreed tnat a retarded cnild can very frequently benefit from a pre-school attended by non-retarded children. B. Educational - that lS, within the age range 6-20 (and note that extending the age range upwards may be appropriate for some mentally retarded individuals). 1. Special classes witnin regular schools. Children within these classes will be mildly retarded and capable of sharing some activities with normal children - for example, physical education. 2. Special schools, characteristically for the moderately retarded, with high staff/pupil ratios (l~8). 3. Psychological services for the diagnosis, placement and, where necessary, the management of retarded c~ildren. C. Adolescence~
vocational guidance, training and placement
T~ese activities recognize that tne mentally retarded should be given equal opportunities to perform work for which their education qualifies them - and this can include employment within industrial, co_rcial, agricultural and government organization without legal or administrative barriers being placed in their way. It should be possible for a mentally retarded person to remain in vocational training if not ready to enter the work force at the time ne attains t~e normal school-leaving age.
D.
Adult life (a) For the mildly retarded, normal employment should be the aim, and independent living in the community.
- 43 -
Annex 5
f
\
(b) Sheltered workshops provide remunerative employment principally for those who are moderatel~ retarded, such remuneration supplementing an invalid penaion. if the family or local community cannot accommodate the retarded individual, then a small group home or hoatel situated within the community is appropriate. Day care centres for the severely retarded with an occupational therapist or 80me other equivalent person available to organize and implement an activity programme are appropriate. Living accommodation will be provided within hostels or other community residences, if families cannot accommodate these individuals. (d)
For the comparatively small number of profoundly retarded individuals or those with multiple handicaps, a small purpose built hospital or hospice is 'appropriate.
Now we can move on to facilities and assistance need at all ages. E. Medical and dental care
A high level of both medical and dental care will be needed, particularly medical care where there is an associated physical handicap or neurological deficit. The primary care system has a role in identifying retarded individuals early in their life span and advising on their management. If the health care syatem is developed to the point where the health of all meabers of a community is known, then such a system has an important potential role in collecting data from which preventive and other progra_s JIlight develop. A multidisciplinary diagnostic centre staffed by a pSYChiatrist, psyChologist and social worker can offer a comprehensive diagnostic service and develop an appropriate management plan. This centre should have access to other forms of expertise (e.g. paediatricians, orthopaedic and ENT specialists, etc.) Problems relating to the sexuality of retarded people are not infrequent and can present particular difficulty. F. Various programmes of Home Care may be ava~lable, particularly for those living too far away to attend group activities. G. Individual support from the Social Services
If, as may happen, a mildly mentally retarded person is living independently in the comaunity, a welfare officer (preferably one who has built up a relationship with the retarded person over a period of time) can provide ongoing help with a variety of matters~ entitlements, fora-filling, budgeting, hire-purcbase, recreational and employment opportunities and 80 on. H. Recreational facilities which bring retarded people together for recreatiooal purp08es. iOte that this goes against the principle of normalization. Where the retarded have joined in the recreational activities of their non-retarded peers, they have been surprisingly well received. However, people with mental retardation may indicate that they prefer to remain within their own groups for recreational purposes and their voice should be heeded.
- 44 -
Annex 5
! I
I
J
1. rinancial allowances to cover any special expense related to the care of a mentally retarded person by his or her family.
J. Joint consultative committees, the purpose of which is to coordinate and advise area health authorities on the optimal delivery of services to the retarded. pro~rammes.
This seems to work better than national coordination as far
as services are concerned but the same does not apply to preventive K. National voluntary organizations
A national society devoted to lobbying on behalf of the mentally retarded as well as providing some direct care. For example. a national
society may provide centres for various age groups (including both those under and over school age), residential centres to provide temporary parent relief and home support programmes in which teachers visit homes regularly, primarily to train parents in the care of their retarded children. Strategies for change There is clearly a need for better education at all levels .- public health education, professional education particularly for all health workers and for teacbers and, through them, for the parents and other family members of the retarded child. There have been rapid developments in knowledge of the biology, psychology and sociology of mental retardation over the last decade and, as a medical educator, I see myself as having a responsibility to make sure these developments are given the prominence they deserve in the medical curriculum. Even more important, though, is a
I j 11
better informed and more positive public attitude since it is from this that an improved attitude at a political level will develop. Changing attitudes should utilize health educators and, Ln particular the luedia.
- 45 ANNEX 6 REGIONAL BIBLIOGRAPHY JAPAN 1.
Oata on the incidence of conditions involving development disabilities among children in Japan was reported by M. Takesada and H. Yamashita, Study Group For Mental Retardation, Ministry of Health and Welfare, Japan, 1981. Oata on the etiological classification of mental retardation result from collaborative studies by M. Arima, M. Nagahata, S. Ohtahara, Y. Suzuki, M. Takesada, K. Takeshita and H. Yamashita, Study Group for Mental Retardation, Ministry of Health and Welfare, Japan, 1981. Istlida, S., Oka, E., Yamatogi, Y., Kohno, C., Yoshida, H., Matsuda, 11.., Ohtahara, S., Mental retardation in epileptic Children. Journal of ttle Japan Epilepsy Society, 2 108-114, 1984 (in Japanese)
2.
J.
MALAYSIA L
I
Halim, A.J. Role of the paediatrician in the development of services for the mentally retarded in Malaysia. International Seminar on "Special Educational Needs of the Mentally Handicapped", British Counc il, London, 1984.
NEW ZEALAND
1.
Children witn handicaps, Board of Healtl"
New Zealand, No 24, 1975.
2. 3.
Morrison, Beasley, D.M.G. and Williamson, The intellectually tlandicapped and their families, 197b. Special care services for the newborn, Board of Health, New Zealand, No. 29, 1981.
PAPUA NEW GUINEA 1. Townsend, P.K., The situation of children in Papua New Guinea. Institute of Allied Social and Economic Affaris, May 1984.
PtlILl PPINES 1.
Davis-Lawas, D. e t. a 1., Cy togenetic 5tudies in Mental Retardation. The Philippine Journal of Pediatrics, 19, 300, 1970. Periquer, A.D. The mentally retarded in R.P., National Commission Concerning Disabled Person, Manila, p. II, 1984. Wong and Tompar-Tiu, A., A COIDIDunLty PrograOBDe in the Philippines. The programme 'Reaching the Unreached', Assignment Children, UNICIF 53/54, 16Y-170, 1981 wah
2. 3.
- 40 -
Annex 6
REPUbLiC OF 1.
KO~A
ijong, Kang-~ Michael, Developing Child Psychiatry in Korea. Journal of the Korean Neuropsychiatric Association, 21, 183-193, 1982.
SINGAPORE t. Paul, F.M. Mental subnormality at its prevention - The Singapore experience. Journal of Tropical Pediatrics, 28, 69-76, 1982.
SOUTij PACIFIC 1. Price, J., Lyon, I.C.T., Veale, A.M.O. and Willock, M.J. A metabolic survey of the mentally retarded of Fiji. Australian Journal of Mental Retardation, ~, 33-37, 1976. Price, J., Mental Retardation in Tonga. Retardation, 5, 69-72, 1978. Australian Journal of Mental
2.
3. 4.
Price, J., Parslow, M. and Chambers, D. Down's Syndrome in Fiji and Tonga. Australian Journal of Mental Retardation, 5, 4-8, 1979. Price. J., A note on mental retardation in the Cook Islands,
Australian Journal of Developmental Disabilities, 6, 35-38, 1980.
I I