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Comparative Study of Supporting Services for Children with Down’s syndrome and Their Families: Perspective of United Kingdom and Bangladesh

A comparative study of supporting services which are available in United Kingdom and Bangladesh for the children with Down syndrome (DS) and their families were explored in the present research by doing literature review based on documentary research methodology. Purpose: The aim of the study was to identify the gaps, discrepancies, merits and demerits between these two countries service providers for the children with DS and their families. Methods: Bangladesh and United Kingdom were selected for the literature review. The literatures were collected from many sources such as websites, international or national organizations, public and private organization’s published report, provision and strategies, e-books, journals, articles and books. The Literatures reviewed were key sources of evidence to justify findings. Gaps, discrepancies have also been found in the Government and private sector providing services. Discussion: There are some similarities, merits and demerits have also identified by exploring services which are available in United Kingdom and Bangladesh for proving services for the children with DS and their families. Some recommendations have been suggested for the authority who deals with the children with DS and their families. Conclusion: It has been stated that except accessible roads, schools and transportation for the children with DS, without trained and enough professionals and staffs who can deal with DS children and their families properly, and improper management among stakeholders can make very challenging for DS children and their families to get proper services.

parent's desire or the present condition of that child. As children with DS have associated health problems as well as they require special care, their parent's may face financial problem to look after them. Therefore, children with DS require supporting services from being their mother's womb till lifelong. United Kingdom is a country of 63,136,000 populations. Among them, almost 60,000 people are living with DS as every year one in every 1000 babies are born with this condition [3]. Unfortunately, Bangladesh does not have studies to say how many people are suffering from the chromosomal disorder like a DS. But some organizations who work with children with DS has estimated that about 200,000 individuals are suffering from DS in Bangladesh, this estimation has been made based on the global trend that one in every 800 children born with this chromosomal abnormality though. The children with DS begin to get their services from a different type of health care providing institutions as prenatal screening and diagnostic test. Supporting health care services can be public funded and/ or private hospital, clinic, and diagnostic centre. As the prenatal screening or diagnostic test is to be done on the pregnant woman, therefore proper, realistic, unprejudiced knowledge about the test should be provided to them before going to test. Thus, prenatal screening and diagnostic test is related to health care providing institutions, health care providers, professionals and services provided information about test and DS, and government policies. Therefore, this study will be looked at all the services regarding prenatal and diagnostic test both in UK and Bangladesh in order to compare their services. Mother of a child with DS may face various problems when she noticed that she has given birth a child with DS. Yildirim et al. [4] state that this situation exposes mothers to intense stress and emotional problems such as denial, anxiety, anger, guilt, unexpected crisis, avoidance of facing external world's attitude, disappointment, decrease in selfconfidence and self-respect. As individuals with DS have associated medical problems, so referral and getting access to specialized professionals according to their problems need to be done. Supporting services may take useful steps to do this. Specialized education and interventions can greatly benefit children with DS [5]. All children place a financial burden upon their parents because of their special needs for therapy, toy, medical procedures, and additional care. Except for financial supporting services, it may be difficult for a nation without universal health care systems in order to raise a child with DS. The research will explore the services for the children with DS and their families which are provided by the both UK and Bangladesh in order to get a comparison study. By exploring the services, the research will be looked at the gaps, advantages, disadvantages, similarities between these two countries' services and trying to find out the potential reasons which are lie to know the present condition of the supporting services which are mostly used and accessed by the children with DS ages from 0 to 18 years and their families.

Pre-natal diagnosis for down syndrome
Prenatal diagnosis can be done in two ways-one is called prenatal screening test and another is a prenatal diagnostic test [6].
In 2001, the UK National Screening Committee recommended that all pregnant mothers are offered to screen for DS [7]. Some studies [8,9] have concluded that due to lack of proper knowledge about screening can make a pregnant woman to make decisions for either invasive testing or termination. Midwives, GP, paediatricians can provide information about screening, test, and its outcome. The study, which was conducted by the Hwa et al. [10] concluded that trained counsellors improved the women's knowledge about the test and encouraged informed choice. Nagle et al. [11] concluded that detailed information about specific testing could increase the knowledge and satisfaction of pregnant women. Unfortunately, Bangladesh does not have any provision for prenatal screening as well as test for detecting DS antenatal. Bangladesh government has just started a pilot project in 2012 for detecting the number of an individual is being disabled [12]. Therefore, services like health institutions (public or private or charity) and its staff (Midwives, Doctor, Nurses, Healthcare Assistants and so on), and public or electronics media could take part in spreading knowledge to the society, particularly to the pregnant women about DS and its outcome and what they should do after getting a baby with DS.

Post-natal diagnosis and support
The children with Down syndrome can be diagnosed immediately after birth by observing some distinctive features on baby's countenance [13]. Children are usually under the care of a paediatrician from birth, who will screen for heart defects and watch out for any other health risks known to be associated with Down syndrome [14]. DS child may be checked more often than other children to pick up developing problems as early as possible [1]. In the UK, health visitors visit every new born baby's house routinely to observe baby's developmental progress. According to babies' development, they provide essential information to the parents.
Children with DS shows weaning problems, delayed teething, dry skin, temperature control abnormality, sleep problems, unable to hold breast and improper toileting [15]. More than 70 percent of the population in Bangladesh currently lives in rural areas [16].
However, the Bangladesh Government and Non-government organizations are trying to strengthen the public health sector by taking some initiatives. It must be recognized that Bangladesh has a well-structured health system with three tiers of primary health care as Upazila Health Complexes (UHC) at the sub-district level, Union Health and Family Welfare Centres (UHFWC) at the Union (collection of few villages) level, and Community Clinics (CC) at the village level and these are backed by the District Hospitals providing secondary level care and the tertiary hospitals of various kind in large urban centres [17]. In addition, Shishu Bikash Kendra (Child Development Centres) has been established in district hospitals and these centres in government tertiary medical colleges perform early assessment and diagnosis for children identified with potential disabilities including DS and they also treat disabilities and offer training and support for parents which are now located in 10 government medical hospitals, 3 in Dhaka and 7 outside and also plans call for replication in all 17 government hospitals and 20 district hospitals [18].

Emotional support
All the mothers having a child with DS had shown a negative reaction about their child's condition and made them shocked and fearful. Although several participants described the various resources and emotional support like support from medical staff, parents of DS children, charity organizations were significant for the coping of adjustment process with DS children [19]. The Down's syndrome Association in UK provide all kinds of emotional support to the parents of DS children. 'Contact a Family for a Disabled Child' is another charity organization that provides emotional support to the parents of DS children. There are many regional DS groups in the UK which provide emotional support to the parents of DS children [14]. In contrast to UK, there is no either public or private emotional support service in Bangladesh which could potentially provide emotional support to the disabled children or their families. Although, there is one centre named Shishu Bikash Kendra (Child Development Centres) situated in some government tertiary medical colleges which provide some sort of emotional support and training to the parents who have a disabled child including DS [18]. Beside this, there are some NGO's provide emotional support to the parents, for example; Handicap Bangladesh, Muslim Aid etc. Due to lack of emotional support, people with disability and their family believe that it is their fate and disabled children are inferior to able-bodied children and disabled children do not have right to participate in any socio-cultural activities [17]. As a consequence, the family may keep their disabled children away from society and sometimes disabled children considered as family's burden as they are unable to earn money for their family. In Bangladesh, a survey conducted in rural areas shows that emotional problem was the most embarrassing problem where 50% respondents stated that they are hated and avoided by the well-bodied peoples as a consequence about 50.4% respondents don't participate in any community activities [17].

Referral to the specialist professionals
Specialist professionals (Cardiologist, Endocrinologist, Physiotherapist, Occupational therapist, Speech therapist, Psychologist, Educator, etc.) are necessary for children with DS in order to deal with their problems as they show many problems.
In the UK, every person has got a family doctor called as General Practitioner (GP) with free of cost [6]. The However, general practitioner is responsible for dealing with children's daily health issues and health visitors visit family homes in the early years to check on children's health and development. They provide help, advice and practical assistance about the care of very young children, child development, sleep patterns, feeding, behaviour and safety [20]. Paediatrician usually refers a DS child to ear, nose and throat consultant (ENT consultant), audiologist, cardiologist/ cardiac surgeon, neurologist, ophthalmologist, endocrinologist, gastroenterologist, oncologist, physiotherapist (PT), occupational therapist (OT), speech and language therapist (SALT). PT, OT and SLT provide essential support, advice and information to the parents as well as to the children at home or at hospital or clinics and the rest of the specialists which mentioned above are usually provide necessary support at the hospital [20]. In Bangladesh, specialized rehabilitation services for disabled children are provided by the Government under the direction of the Ministry of Social Welfare (MOSW) and by non-government organizations (NGOs) [18]. "Hope for Life", "Muslim Aid Bangladesh", "Centre for Rehabilitation of the Nevertheless, when compared to their typically developing peers, children with Down syndrome are typically more likely to demonstrate behavioural difficulties, such as non-compliance and stubbornness [24]. Therefore, proper educational strategies, intervention, and skilled teachers and supporting staff can educate a child with DS.

Inclusive education for children with DS: Successful inclusive
schools describe the crucial significance of parents' participation in the process of their child's inclusive education. Baker et al. [25] indicate from three meta-analyses that a small-to-moderate positive effect of inclusive education exists in terms of social and academic outcomes for children with special needs. Research has found that learners with learning difficulties who attended inclusive classrooms did not show high levels of loneliness and that a remarkable increase was evident in the number of reciprocal relationships that they formed [26,27]. In the UK, the Code of Practice defines the essential framework of Government guidance on the treatment of children with special educational needs.
Department for Education and Department of Health [28] has set out a number of 'fundamental principles' in the Code of Practice. In the UK, LA's responsible for SEN services that provide support for children in the family home, at nurseries and playgroups and in a range of school settings. There is virtually no access to preschool education in Bangladesh for children with disabilities, except for programs designed and implemented through non-governmental organizations. For example, BRAC and Save the Children's have run a project since 1997 known as preschools or early childhood programs that serve children with disabilities. These programs has been serving to children at the "pre-primary" level, which includes children ages 5 to 6 or 7 years of age [29].

Financial support for children with DS
Existing studies indicate that mother's possibility to work outside at home may be decreased if she has a disabled or sick child [30,31] and father's work hours can be reduced due to looking after a disabled child Therefore, financial support either from government or charity or private organization can be helpful for the parents having a Down syndrome child in order to meet their child demands as well as they can provide enough time to look after their children. In the UK, a wide range of financial assistance is available

Social support for children with DS and their families
Dunst et al. [34] defined social support as being a multidimensional construct that includes physical and instrumental assistance, sharing of information and resources, and as providing emotional and psychological support. Therefore, the summation of these above definitions provided the definition of social support as emotional, psychological, financial, institutional, informational support which can come from family members, friends, teachers, any public or private institutions, and professional states. In the UK, local authorities (LA) provide essential support, advice and help to the disabled children and their parents in order to meet their needs [20]. Parents or disabled children do not even need to do register to get the support from LA. It is a programme which is arranged in a way by which children with disability can develop their personal and social progress as well as parents can get some rest from their caring responsibilities [35]. Social workers can provide practical help, advice, information and support to get access into the supporting services for all disabled children or their parents or even whose do not have internet access or unable to browse or unaware of 'local offers'. Apart from those public social supporting services, the UK has a lot of private or charitable organizations which provide social support both to the parents and disabled children. 'Contact a Family' runs a helpline for family members and parents to get in touch with other parent carers of disabled children living nearby [36]. information about the phenomenon one wish to study [37]. Here, phenomenon refers to the services existing both in Bangladesh and UK to provide support for the children with DS and their families.

Methodology
Documents present a good source of text data [38]. It is sometimes assumed that secondary or documentary analysis of data raises a few or no ethical considerations. However, therefore the researcher will be reliant on the consent that is being gained on the literatures.

Findings
The principal purpose of this present research was to compare the services which are provided by the both UK and Bangladesh for the children with DS and their families. The present research has also identified some potential reasons which may help to better understand the services and supports most needed and accessed by the children with DS and their families. These are described below:

Government provisions and services
In the UK, the National Screening Committee advises ministers and the NHS of four UK countries about all aspects of screening and supports the implementation of screening programmes including DS screening [39]. The purpose of this screening is to offer all women a screening test for DS and to provide information so that they are able to exercise informed choice. Having this opportunity to 500 BDTK per month [12] but it is still not enough. Therefore, Bangladesh Government needs to focus on raising the public fund regarding disabled children and their families. In contrast to UK, there is no public organization or agency in Bangladesh for providing any kind of social support. Having no social support, the family often sees the disabled children as a burden [18] as well as most of the disabled children are socially isolated and anxious about their disability [17]. Therefore, deficiency of Government provision concerned with social support, recruitment of social worker and joined up working among different stakeholders are identified as the gap between these two countries regarding to social support.

Private or charity or non-government organization's services
There Bangladesh has some namely financial support providing NGO's.
There is even no social support providing service except one that is situated in the capital of Bangladesh.

Trained professionals and staff
A major problem is the lack of skilled and trained personnel to support inclusive practices and training in behaviour and classroom management techniques in Bangladesh. Obstacles include low job satisfaction for primary school teachers due to poor salaries and high student-teacher ratios, high numbers of staff vacancies, rising workloads, low levels of awareness about disability and sensitivity to children with disabilities, limited technical support for inclusive education, and lack of monitoring to ensure policies are carried out [18]. The shortage of trained professionals and staff has also seen as a problem in the health sector of Bangladesh. Bangladesh Health Watch has concluded that Bangladesh suffers from shortages and misdistribution of staff, a skill mix imbalance, a negative work environment and a weak knowledge base all of which impact the availability and quality of health services received by children with disabilities [40]. Qualified practitioners constitute a low percentage of all health care providers and the country lacks sufficient numbers of doctors, nurses and health technologists according to WHO standards and averages for low-income countries [41]. Unlike Bangladesh, the UK has 2.8 physicians per 1000 people [42] as well as total expenditure on health per capita (Intl $, 2013) is 3,311 [3].
These statistics confirmed that the UK Government spends too much money behind the health sector including training of health sector professionals and staffs regularly.

Literacy and usage of internet
Stromquist [42] states that literacy skills are fundamental to informed decision-making, personal empowerment, active and passive participation in the local and global social community.

Access to services
Lack of accessibility is to be a major barrier to use of services which are available for children with disabilities in Bangladesh.
Public transportation also presents barriers to accessing services and schools, especially for wheelchair users who cannot ride buses and trains independently. An Infrastructural barrier is also one of the key obstacles for the inclusion of children with disabilities in education. Lack of accessible toilets also forces many children to drop out of school, especially girls. Leonard Cheshire Disability [44] states that It has been noted that in many cases in developing countries like Bangladesh, disabled children especially girl children do not go to school since they are unable to use the toilet facilities.
Infrastructural accessibility in the school buildings and overall accessible environment is required for children with disabilities.
When there are no access roads, and transportation then it becomes very challenging for a child with disability and their families to get Care and Development [45].

Conclusion
It has found that there are many gaps between these two countries public service providers for children with DS and their