Home » Special needs, special rights: addressing young children with ­disabilities via inclusive early childhood development

Special needs, special rights: addressing young children with ­disabilities via inclusive early childhood development

Donald Wertlieb, President, Partnership for Early Childhood Development and Disability Rights (PECDDR), and Vibha Krishnamurthy, Executive Director, Ummeed Child Development Center, Mumbai, India

The community health worker, at each visit, works with the family, using a strengths-based approach to support families in promoting their child’s development. Photo • Courtesy Pervez Daver/Ummeed Child Development Center

The community health worker, at each visit, works with the family, using a strengths-based approach to support families in promoting their child’s development. Photo • Courtesy Pervez Daver/Ummeed Child Development Center

At the cutting edge of synergies in human rights and international development agendas are the special needs and rights of children with disabilities. Guided by the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, the challenge is to construct an ‘inclusive early childhood development’ framework synthesising fragmented traditions in the fields of early childhood development and early childhood intervention. This article outlines the key considerations (Vargas-Baron and Janson, 2009; Engle et al., 2011; Weigt, 2011; World Health Organization, 2012a,b; Consultative Group on Early Childhood Care and Development, 2012; Aber et al., 2013; Institute of Medicine/National Research Council, 2014; Levy et al., 2014; United Nations Sustainable Development Solutions Network, 2014; Woodhead, 2014). Often, consideration of children with disabilities begins and ends with the quandaries of definition and measurement. What is a disability? Who qualifies as a ‘child with a disability’ or ‘at-risk’ for a disability? Are children with disabilities included among ‘orphans and vulnerable children’? Children affected by AIDS/HIV? Malnourished, stunted, low-birthweight?

Disability is not only about illness, defect or impairment, but primarily about the mismatch between the child and the opportunities and obstacles presented by society for healthy development and well-being. A broad definition of disability, proposed by Halfon et al. (2012), is:

an environmentally contextualized health-related limitation in a child’s existing or emergent capacity to perform developmentally appropriate activities and participate, as desired, in society.

How many children does this entail? At the launch of its State of the World’s Children reports in 1980, UNICEF estimated the number at 150 million. In the 2013 report, the first to give priority voice to this significant minority of children, the figure was put at 93 million – with national estimates ranging from 3% to as high as 48% of the population of children. Refinements of definition, epidemiology and measurement remain crucial challenges, but need not stop progress towards including these children in global efforts to build healthy, prosperous societies.

Four transformative trends
Four related trends are propelling a science of developmental potential (Institute of Medicine/National Research Council, 2014) and applications in policies, programmes and services that enhance the well-being of all young children, including those with disabilities.

1 A growing number of young children are living with disabilities.
An unintended consequence of the successful drive to reduce infant mortality is that more babies are surviving with chronic illness and disability that compromises their capacity to reach their optimal development (Save the Children, 2012). Just as industrialised nations encountered this ‘new morbidity’ in the 20th century, developing countries now must nurture and protect more children with changing constellations of health needs (American Academy of Pediatrics, 2001). Still, the large non-governmental funding organisations that influence priorities for low- and middle-income country governments continue to focus on decreasing childhood mortality and disease eradication, with little attention to developmental outcomes of survivors (Scherzer et al., 2012).

2 A shift away from narrow biomedical models of health, development and disability toward comprehensive, multidimensional bio-psychosocio-cultural models.
There is increasingly sophisticated understanding of early brain development and the lifelong health impacts of toxic stress and adverse childhood experiences. We have learned that ‘early childhood investments substantially boost adult health’ (Campbell et al., 2014, p. 1478), exposing the gross inequities associated with social determinants of health disparities. Infant mental health and neuroscience research now inform our understanding of how babies learn, supporting new models of intervention (Yurima and Charman, 2010). There is a growing literature on what helps to decrease toxicity and promote healthy development.

3 A shift from a narrow deficit-oriented medical model towards more holistic and ecological models that embrace strengths, protective and promotive factors – the child’s, the family’s, and the community’s.
This includes a shift from a ‘disease model’ of disability to thinking of children with disability within a framework of functional limitations imposed by the environment (WHO, 2007). As a consequence, our interventions become less narrowly focused on diagnosis, exclusion and ‘help’ through compensatory and remedial efforts involving specialist ‘support’ in the ‘mainstream’. Enablement, empowerment, advocacy, and self-advocacy join the array of intervention objectives.

Another consequence of the shift towards more multidisciplinary approaches is the challenge of advocating for the mainstreaming of disability across multiple disciplines and sectors (Levy et al., 2014). For instance, the responsibility for early identification of young children with delays or disabilities may be spread across ministries of Women and Child Development, Health, Human Resources, Education or Social Protection. Over the last two decades there has been a move towards approaches that engage the family and the community, with growing evidence that community-based rehabilitation can be inclusive and sustainable. (WHO, 2010). Most recently, the early childhood space is expanding to include not just the traditional governmental and NGO players, but also private, business and corporate partners – as explored on pages 86–7 of this issue (ReadyNation, 2015).

4 Rights-based frameworks are replacing charity-based approaches.
The Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD) together have power and promise for young children with disabilities (Brown and Guralnick, 2012; Lansdown, 2012). Perhaps one of the most illuminating aspects of progress fuelled by rights-based action can be seen in the ongoing de-institutionalisation of children, many of them children with disabilities, around the world (Mulheir, 2012; Office of the High Commissioner for Human Rights, 2012).

Despite widespread acknowledgement of the special challenges of disability, gaps and omissions threaten the effectiveness of efforts to prioritise ‘inclusive early child development’ in the emergent post-2015 agenda. For example, children with disabilities merit less than a page of text in the 463-page Education for All (EFA) Global Monitoring Report 2009 – although the report does recognise that ‘disability is a significant source of inequality and marginalization in education’ (p. 192). The report also laments that:

progress in recognizing disability as an area needing policy attention has been limited. Only ten of the twenty-eight education plans endorsed by the Fast Track Initiative between 2002 and 2006 included a strategy for children affected by disability. While 13 others mention disability, there is little detail of strategies for the inclusion of disabled children in education, and five make no mention at all.
(pp. 192–3)

The particular challenges and opportunities involved in addressing the needs and rights of young children with disabilities are well-articulated in recent publications (WHO, 2012a, 2012b; Denboba et al., 2014; Howgego et al., 2014; Woodhead, 2014). ‘Inclusive early childhood development’ is supported by ‘triple-twin-tracking’ – balancing universal with specialised services, balancing child-centred efforts with family-focused and community-based efforts, and integrating specialised early childhood knowledge with broader developmental frameworks (Levy et al., 2014).

Two examples of action
Two examples – one local, one global – illustrate promising ways forward in addressing the needs and rights of young children with disabilities. Feedback and mutual learning between such initiatives, a ‘glocalisation’ process elaborating good practice and evidence, reinforce the aforementioned transformative trends.

1 Ummeed Child Development Center
This is a nonprofit in Mumbai, India, set up in 2001 to provide services for children with developmental disabilities and their families. The WHO estimates that Mumbai has 650,000 children with developmental disabilities. Ummeed’s Early Childhood Development and Disability training programme, set up in 2008 with usaid funding, targets high-risk communities through community health workers, who are trained through four, four-day modules spread over a year. Each module addresses a specific objective: promoting early childhood development using a family-centred approach (WHO, 2012c); fostering development using the Guide for Monitoring Child Development (GMCD) tool (Ertem et al., 2008); working with families of children with developmental delays or disabilities; and advocacy at a local level for families of children with disability. The programme is currently being implemented in three sites – one large urban slum, one rural and one semi-rural setting. To date, 60 community health workers have been trained.

The community health workers make home visits to every family with a child under three at least once a month. At each visit they work with the family, using a strengths-based approach to support families in promoting their child’s development, and monitoring the child’s development using the GMCD tool. When children are identified with developmental delays or with known risk factors (such as malnutrition or anaemia), the worker makes more frequent visits and facilitates referrals for specific concerns (for example, a hearing test for a child with suspected hearing loss). While the focus is always on the development of the young child, the family-centred approach also enables the addressing of risk factors such as maternal depression and domestic violence, which can be referred to local NGOs. Community health workers talk about early childhood development and disability in a range of community activities such as self-help groups for women, activities for mothers at local government daycare, celebrations for festivals, immunisation camps and other situations that bring young families together. They work with others in the community to identify and advocate for local resources for children with disabilities and their families.

Early results are encouraging in terms of early identification of children with disabilities, community engagement in and community identification of local resources. There is potential for the programme to scale via the government system and be replicated in other low-resource settings; in 2014, the Government of India launched a new ambitious programme, the National Child Health Programme (RBSK), with a mandate to address childhood disability. And now with recognition and support from Grand Challenges Canada1 this programme is strengthened by an innovative and vital North–South collaboration with global multisectoral partners.

2 The Global Partnership on Children with Disabilities
Founded in 2012 as a platform for advocacy and collective action, this growing multi-stakeholder coalition represents about 250 organisations, including international, national and local NGOS, disabled people’s organisations, academia, youth, governments and the private sector. Its mission – ‘to galvanize and coordinate global and national efforts towards inclusive development with a focus on children with disabilities’ – is guided by a human rights approach, drawn mostly from the CRC and CRPD.

As the partnership’s first wave of ‘task forces’ began work in education, nutrition, assistive technologies and humanitarian action2, it became clear that the cross-cutting perspectives of ‘inclusive early childhood development’ would enrich their deliberations and actions. The partnership’s secretariat asked a network of advocates and experts convened by the Partnership for Early Childhood Development and Disability Rights to function as an Early Childhood Development Task Force. This now consists of 125 volunteers affiliated with over 50 organisations and hailing from 28 countries across nine regions.

Over the past two years, the activities of the task force have included:
(a) multidisciplinary and cross-sectoral teams responding to efforts in several nations to build more inclusive early childhood systems and interventions, replacing institutional care with comprehensive community-based services, enhancing primary health care with developmental paediatrics, and fostering rights-based transformations of human services. For instance, task force members are collaborating with UNICEF and government agencies to provide specialised foster care for infants with disabilities, who would previously have been institutionalised in detrimental ‘baby homes’.
(b) designing, deploying and updating advocacy tools and documents such as Including Children with Disabilities: The early childhood imperative (UNESCO, 2009) and policy messages (EADSNE, N.D.).
(c) securing a foothold for ‘inclusive early childhood development’ in broader advocacy and awareness initiatives of the Global Partnership, and
(d) exploring synergies and collaborations among ‘inclusive early childhood development’ initiatives and the emergent field of global education diplomacy.

Ways forward and recommendations Considering the trends and examples articulated above, we offer these recommendations for moving forward.

• We join Halfon et al. (2012) in calling for: policymakers to strengthen existing data systems to advance understanding of the causes of childhood disabilities and guide the formulation of more strategic, responsive, and effective policies, programs, and interventions. (p. 13) Policy, research and children’s well-being can and must be enhanced by designing and evaluating developmentally contextualised interventions (Wuermli et al., 2015). Progress depends upon sustained and systematic attention to improved epidemiology and statistical designs (UNICEF, 2014a) as well as analysis and reform of diverse governance structures. (Britto et al., 2014).

• We call on scientists and funders to reject the exclusion of disability matters from research. It is unfortunately and disappointingly common for even seminal articles in the field of early childhood to explicitly exclude children with specified forms of disability from consideration. While one might appreciate the limited and limiting scientific expediency of such a decision, one must also challenge the scientific community to better serve the needs and interests of all children, including those with disabilities.

• While we applaud the articulation of strong economic, scientific, social and rights-based advocacy tools by organisations such as UNICEF, we lament that at this crucial moment in identifying sustainable development targets, a key policy brief on young children would be promulgated without any mention of children with disabilities (UNICEF, 2014b). Moving forward we expect that greater priority and intentionality on inclusion will benefit all children (WHO, 2012b). Recognition of these gaps and omissions allows for cross-sectoral problem solving likely to enhance and even harmonise distinctive priorities in early child development, education, social protection, nutrition and health.

• With growing attention to new ways of investing in ‘inclusive early childhood development,’ such as social impact bonds and enhanced policy and governance (Gustafsson-Wright and Atinc, 2014), pushing cross-sectoral collaborative advantages to test and apply innovations must become a priority. We reinforce the message from Scherzer et al. (2012) to large funding organisations about the need to invest not just in child survival in low- and middle-income countries, but in the developmental outcomes of children who survive.

Notes

1 Grand Challenges Canada gives details of this project online at: http://www.grandchallenges.ca/grantee-stars/0727-03/#description (accessed April 2015).

2 More information about the Global Partnership on Children with Disabilities and its task forces can be found at http://www.gpcwd.org/early-childhood-development.html (accessed April 2015).

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