Early Childhood Development and its Connection to Disability

Early childhood development (ECD) framework of UNICEF states that from conception through birth to eight years of age is crucial timeline for child development. Here, development reflects not only physical growth but also the cognitive, emotional and interactions with each other(1). The main focus of ECD is to ensure that a child is healthy from all the aspects which mean promoting optimal functioning and participation. Having said this, ECD is not only limited to health as we know that health is largely influnced by its determinants.  For children, some of the important determinants of health are mother’s health, family support, educational opportunities and access to services.  There are certain services that children would need at the course of growth and development out of which nutrition as well as immunization are the most important ones. These two types of health care are directly related to preventing the unwanted deaths and promoting the health of children for a long run.  For young children, every day environmental scenario is something new. Hence, they might need facilitations to overcome such new challenges. For example, going to toilet for the first time might need assistance from family members.  Therefore, family care and stimulation provides nurturing environment to the children which are also essential components of ECD. The real world is an interaction with not only family members but also to peers. Hence, facilitation of peer activities in the form of play is another important area to stimulate the components (including emotional and cognitive) of child development. Schooling is an important means of early child development that provides further cognitive, emotional and physical stimulation to nurture the growth and development. 

Now let’s understand the scenario of children with disability from ECD point of view. The scenario might look complex because the child is disabled now which means he or she may not show the same level of activities compare to the child of same age. So, how does the nutrition and immunization service work for such child? What are added responsibilities of family members? Very importantly, how do we ensure the peer interaction, play and educational support which are also the important components of ECD? Before probing these questions it is quite vital to detect the impairments. The important and perhaps the first step to answer is, how do we confirm the impairment? What are the roles of health workers, family and teachers for the detection?

From the child protection act (1992), National Planning and Plan of Action on Disability in Nepal, (2007), UNCRPD, to Incheon strategy (2012), there had been mentioning of ECD and its components. Also, these commitments are gradually being converted into the budgeted actions of Ministries as well as agencies, for which we have to acknowledge the advocacy made by right holders and service providers in childhood disability sector. According to the living condition study, the commonest cause for disability in Nepal is congenital/by birth which means more people start acquiring disability from the birth. The same study reported that 43.4% of disability is acquired by birth to the fifth years of life(2). Actually, real prevalence in children is more than what was reported because these estimations were made based on Washington group questionnaire which is not sensitive enough to detect the problems on developmental and cognitive functioning. (As explained below)

In any settings the confirmation of disability is the starting point to address the ECD need of children with disability. In fact, after the endorsement of international classification of functioning (ICF) by WHO, the school of thought to define disability has been drastically changed.  But having said this, it is also important to evaluate how far the signatory countries are progressing on shifting the medical model of disability intervention to the biopsychosocial model as defined by ICF(3). According to ICF, disability is the state of functional limitation or participatory restriction (because of functional limitation) due to the negative interaction between medical conditions, personal factors (motivations, confidence, willpower of the person etc.) and environmental factors. Here, environmental factor means not only the physical environment but also other contextual elements like support from family members, access to varieties of services, leadership & governance of the sector etc.  

I would like to share a simple example which is based on my experience on working with children with disability. There were two children living with bilateral clubfoot, belonging to one of the hilly districts of Nepal who were detected by “Early Detection” trained health workers. Both the family members could not afford the transportation, accommodation and fooding expenses to go to nearest rehabilitation center (100 KM away) where service charge for families belonging to poor economic back ground is usually waived.  Then the decision was made to cover out of pocket expenditure of both families. Surprisingly, one family did not take the child for treatment while the next did. Very recently, I had a follow up visit to the same place and could gain a visible impact on a child who has gone through the treatment while a child was walking properly and family members were quite happy to the progress made by a child. The foot of a child who did not undergo treatment was deteriorating. It was also discovered that father was uncooperative and drunkard. Although mother wanted her child to get timely treatment she was forced to get bounded to her household chores and could not travel alone. Neither her husband accompanied her to treatment center nor was she confident enough to travel alone. From this example, it can be well understood that how important is the family support which is one of the contextual elements. Even though the medical care was guaranteed, the child did not have access to it because of contextual barriers. Thus, only medical focused intervention may not always address the disability issue that is why we need to visualize disability from wider lens which is the combination of medical, psychological and social factors.

 Also, my experience says that structural impairment (physical) disability are quite visible which might be detected at the health facility or school level once after providing short term training or orientation . But the detection of disability affecting emotional and cognitive components of ECD might need more training and focus as these types of impairment are not directly visible in a snapshot.  Family members should be central to the disability detection as they are in the best position to explain what they have observed in child. Detection or medical diagnosis may not fully contribute to address the ECD need of child.  To facilitate the early childhood development of children with disability, we need to know what child can do and what not as per his/her age threshold. That’s why we need to assess disability in terms of functioning across the domains of physical, emotional and cognitive areas.

As explained above, ECD primarily constitute growth and development in physical, emotional and cognitive aspects which means that each of these elements needs to be assessed while we confirm the disability on children. In many stances disability might appear as a mix of these elements.

Let’s talk about the very recent advancement on the data collection of the children with disability (2-17 years). UNICEF in collaboration with the Washington group on disability statistics has developed the module on child functioning for identifying children with disability on surveys. This module is precursor of previous tool like  Ten Question Screening Instrument  and previous short sets of Washington Group on Disability (4)(5) (6). The new child functioning module is more sensitive to previous tools as it is able to detect the developmental and behavioral components of the disability in comparison to previous tool. It means that now we have the tool in place which can detect more complex and invisible type of childhood disabilities. The new child functioning module might not include 0-2 years as same age group is not sufficient to confirm the functional limitation. In Nepal, it is widely claimed that the present 1.94% prevalence of disability reported by 2011 census is far more than the actual prevalence of disability as  simple census data collection process might had missed to detect  disability that are not visible.  Hence, THE NEWLY DEVELOPED MODEL BY UNICEF gives an opportunity to ensure the inclusive data collection (covering all the aspects of ECD). For sure, partnership among right holders association, UN agencies, service providers and decision makers should be the key strategy to have such survey implemented in Nepal.

  

I will be writing my next blog on the link between early detection and inclusive education from the perspective of ECD. Please stay tuned.

I welcome your feedback and suggestions.

(This is my personal blog where I present my personal write ups hence it reflects my view only)

References

1.        Early Childhood Development [Internet]. [cited 2018 Aug 14]. Available from: https://www.unicef.org/dprk/ecd.pdf

2.       Eide AH. Living conditions among people with disability in Nepal. SINTEF Rapp. 2016;

3.      WHO (World Health Organization). World report on disability 2011. Am J Phys Med Rehabil Assoc Acad Physiatr [Internet]. 2011;91:549. Available from: http://www.ncbi.nlm.nih.gov/pubmed/22726850

4.        Cappa C, Mont D, Loeb M, Misunas C, Madans J, Comic T, et al. The development and testing of a module on child functioning for identifying children with disabilities on surveys. III: Field testing. Disabil Health J. 2018;

5.           Massey M. The development and testing of a module on child functioning for identifying children with disabilities on surveys. II: Question development and pretesting. Disabil Health J. 2018;
6.      Loeb M, Mont D, Cappa C, De Palma E, Madans J, Crialesi R. The development and testing of a module on child functioning for identifying children with disabilities on surveys. I: Background. Disabil Health J. 2018;