Paediatrics




Mentally disabled children in the Middle East and their integration into society

As integration of persons with inherent mental disability is increasingly becoming a global reality, the Arab world is still lagging behind. Dr Sabah Al Lawati reports.

Mental disability or mental handicap is caused by a group of disorders and generally appears before adulthood. It is characterised by significantly impaired cognitive functioning. It has historically been defined as an Intelligence Quotient score under 70. Once focused almost entirely on cognition, the definition now includes both a component relating to mental functioning and one relating to individuals’ functional skills in their environment. Disorders leading to mental disability are mainly hereditary disorders and include Down’s syndrome and Fragile X syndrome. However, mental disability can also arise due to other problems, such as lack of oxygen at birth.

Worldwide, 2.5% to 3% of the total population are mentally disabled, which in most cases is a lifelong condition. The figures in the Middle East are slightly higher mainly due to consanguineous marriages, though exact epidemiological data is extremely difficult to obtain.



A survey carried out by the World Bank in Egypt, Jordan and Yemen estimated that between 5% and 10% of children under age 18 have at least one type of disability; many of these children face health, educational, social and psychological problems [World Bank, 2004]. A community-based study carried out in Jeddah, Saudi Arabia, found that speech, motor or mental disabilities were most common. Potentially modifiable maternal risk factors for having a disabled child were reported to include: early and late age of marriage and childbearing, consanguineous marriage, poor education and unemployment.

Mental health needs and services for children and adolescents with special needs is a largely neglected area in the MENA region overall. There are three major obstacles. Firstly, some families are ashamed to acknowledge that their child is impaired or handcapped. Many children with mental disability are kept at home without receiving specialised services. Secondly, when families decide to seek placement for their children in either day centres or residential facilities, they may be faced with fees that they cannot afford given their poor financial conditions. Lastly, even after placing a child in a centre, integrating the child later into society can be problematic. Not many schools accept children with a physical or mental handicap. Similarly, (and except for governmental agencies), few businesses will take on adolescents or young adults with special needs even though a specific job may be well within their capacity.

Disabled children frequently end up being kept at the fringe of society, where they continue to be non-productive and develop additional behavioural problems because of the lack of structure in their life. For example, a research group found that in UAE, psychiatric disorders were more frequent among children with mental disability (1) .

This stigmatising effect further contributes to social exclusion of children with mental disability. There is also the traditional common belief that mental disability is related to God’s will that the parent should have a child with a disability. Commonly, persons with mental disability have been considered burdensome and shameful, because they are incapable of contributing to traditional social obligations and roles. These attitudes and behaviours not only prevent the children from getting appropriate medical care for their conditions, but also prevent them from living “normally”.

Community attitudes toward disability are important since they contribute heavily to the presence and degree of stigma associated with the condition. Children with mental disabilities need special care to overcome social, intellectual and physical problems. However, mental disability in young children is often missed by clinicians. Diagnosis is highly dependent on a comprehensive personal and family medical history, a complete physical examination and a careful developmental assessment of the child. These will guide appropriate evaluations and referrals to provide genetic counselling, resources for the family and early intervention programs for the child.

The children must be properly assessed and the exact cause be elucidated e.g. what is the exact genetic disorder, to what degree is the child mentally impaired, etc. Unfortunately, the current perception, to a large degree in communities in the Arab world, is that a mentally handicapped person is unable to learn to care for themselves. However, most children with mental disability can learn a great deal, and as adults can lead at least partially independent lives.

Inclusion

In Kuwait, the Kuwaiti government has formed a policy of inclusion (law 13/96), adopted in 1996, which asserts that people with disabilities have a fundamental right to live and grow within their local communities, making Kuwait probably the only Gulf country to adopt such a policy as a law. This law has spawned an expanded system of services to encourage people with disabilities to live like people without disabilities. In Kuwait, most children with Down’s syndrome now attend kindergarten and are included in social programmes for children in the general population.

In Saudi Arabia, a study shows that 83.2% of mentally disabled children did not attend school. The authors considered that the likely reason was the lack of suitable educational programmes. This points to a need to provide special education programmes tailored to the specific requirements of affected children. Such programmes should be linked in to the wider education system. There is also a need to provide psychological and other support services to both the children affected and the families caring for them. Recruitment of skilled personnel in the fields of care and rehabilitation is also required.

However, professionals’, leaders’, and students’ views and beliefs about the integration of individuals with mental disability into society may result in slowing the process of inclusion and discouraging people from accepting these individuals. For example, though senior staff in Kuwait’s Ministry of Social Affairs succeeded in including children with Down’s syndrome into public kindergarten, no other effort has been made since 1996 to integrate other children with mental disabilities into inclusive educational settings e.g. children with Fragile X.

No guidelines

Despite the launch of various associations and centres for these children in Arab countries, there are no common training methods or curricula for retarded children or common assessment and management medical guidelines. Parents can, with the help of a professional, prepare various training methods for their retarded child. Mental disability may be complicated by physical and emotional problems. The child may also have difficulty with hearing, sight or speech. All these problems can lower the child’s potential.
 


Table 1 provides a brief overview of recommendations for assessment and management of mentally handicapped children.

Teaching programmes in the Middle East for mentally handicapped children

Special education schooling for children with learning disabilities and mental disability is present in Egypt, Jordan, Lebanon, Saudi Arabia, Tunisia and the United Arab Emirates (2).

Philanthropists and charity groups have built many centres for the physically and mentally handicapped. Many of these centres are now occupied by both groups. However, in general there seems to be no national guidelines or curriculum for the care and education of these children. In addition, there is very little joint coordination, which can result in a waste of human and financial resources.

Importantly, none of the institutions provide a comprehensive management programme i.e. medical and educational needs for these children. This mainly stems from the fact that:

- Not all children with mental disability seem to have a definitive diagnosis (the cause is not always assessed e.g. genetic or environmental, etc), therefore needs cannot be adequately assessed

- Lack of expertise of the staff in these facilities

- Lack of awareness of staff and parents regarding need of national guidelines and registries for all the disorders resulting in mental handicap. The registries will help elucidate the level of commitment from governments needed for these children and type of assessment and monitoring children need with the different disorders, which lead to mental disability.

Furthermore, most of these centres, though useful for children, are focused on younger children. Admittedly, the needs are greater earlier; however, once the children are older they do not have many options and integration, once again, can become problematic.

Summary

The general goal of all types of services provided for children with mental disability is to improve their participation in society. As the Arab world continues to develop social and educational programmes about inclusion, attention must also be paid to the connection between integration and attitudes, provision of adequately experienced expert staff, social care and programmes which will allow these individuals to lead at least semi-independent lives.

References:

1. Swadi H, Eapen V. A controlled study of psychiatric morbidity among developmentally disabled children in the United Arab Emirates. J Trop Paediatr 200046(5):278-81

2. Okash A. Mental health services in the Arab world. Arab Studies Quarterly (ASQ). Fall 2003. 

Five-minute screen reveals subtle signs of autism in one-year-olds

A five-minute checklist that parents can fill out in diatrician waiting rooms may someday help in the early diagnosis of autism spectrum disorder (ASD), according to a study funded by the US National Institutes of Health (NIH). Published 28 April 2011 in the Journal of Pediatrics, the study’s design also provides a model for developing a network of paediatricians to adopt such a change to their practice.

“Beyond this exciting proof of concept, such a screening program would answer parents’ concerns about their child’s possible ASD symptoms earlier and with more confidence than has ever been done before,” noted Thomas R. Insel, MD, director of the National Institute of Mental Health (NIMH), part of NIH.

Identifying autism at an early age allows children to start treatment sooner, which can greatly improve their later development and learning. However, many studies show a significant delay between the time parents first report concerns about their child’s behaviour and the eventual ASD diagnosis, with some children not receiving a diagnosis until well after they’ve started school.

Recognising the need to improve early ASD screening, Karen Pierce, PhD, of the University of California, San Diego, and colleagues established a network of 137 paediatricians across San Diego County. Following an hour-long educational seminar, the paediatricians screened all infants at their 1-year, wellbaby check-up using the Communication and Symbolic Behavior Scales Developmental Profile Infant-Toddler Checklist, a brief questionnaire that detects ASD, language delay, and developmental delay. The questionnaire asks caregivers about a child’s use of eye gaze, sounds, words, gestures, objects and other forms of age-appropriate communication. Any child who failed the screen was referred for further testing and was re-evaluated every six months until age 3.

Out of 10,479 infants screened, 32 were identified as having ASD. After excluding for late onset and regression cases, this is consistent with current rates that would be expected at 12 months, according to the researchers. When including those identified as having language delay, developmental delay, or some other form of delay, the brief screen provided an accurate diagnosis 75% of the time.

Following the screen, all toddlers diagnosed with ASD or developmental delay and 89% of those with language delay were referred for behavioural therapy. On average, these children were referred for treatment around age 17 months. For comparison, a 2009 study using data from the US Centers for Disease Control and Prevention found that, on average, children currently receive an ASD diagnosis around 5.7 years (68.4 months) of age, with treatment beginning sometime later.

In addition to tracking infant outcomes, the researchers also surveyed the participating paediatricians. Prior to the study, few of the doctors had been screening infants systematically for ASD. After the study, 96% of the paediatricians rated the programme positively, and 100% of the practices have continued using the screening tool.

“In the context of a virtual lack of universal screening at 12 months, this programme is one that could be adopted by any paediatric office, at virtually no cost, and can aid in the identification of children with true developmental delays,” said Dr Pierce.

The researchers note that future studies should seek to further validate and refine this screening tool, track children until a much older age, and assess barriers to treatment follow up. REFERENCE:

Pierce K, Carter C, Weinfeld M, Desmond J, Hazin R, Bjork R, Gallagher N. Catching, Studying, and Treating Autism Early: The 1-Yr Well-Baby Check-Up Approach. J Pediatr. 2011 Apr.

doi:10.1016/j.jpeds.2011.02.036

 
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ate of upload: 15th Aug 2011

 

                                  
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