5

Global Efforts to Include Children with
Developmental Delays and Disabilities
in Research and Policy Agendas

Andy Shih gave a presentation on the South European Autism Network (SEAN).¹ The network, modeled after the World Health Organization’s (WHO’s) South European Network, involves nine countries in the region: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Kosovo, Macedonia, Montenegro, Romania, and Slovenia (Turkey is affiliated with the network as an observer country). Every year, national coordinators from each country—who are appointed by each country’s minister of health—gather to discuss barriers, successes, and experiences in enhancing the lives of individuals with autism.

From September 2014 to October 2015, the network conducted a Caregiver Needs Study in Albania, Croatia, Macedonia, Romania, and Turkey to understand the parental experience in navigating the system to obtain support for their children. Shih said the parent perspective was missing from previous research. Preliminary findings showed that 33 percent of caregivers reported difficulties or delays in accessing care for their children because of cost; 24 percent of caregivers reported traveling more than 100 kilometers to receive a diagnosis for their child; and 21 percent of children ages 5 and older were not enrolled in school. The final report for this study is forthcoming.

Shih stated the existence of this network reflects an awareness and political will to provide for individuals with autism, but there is more

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¹ Andy Shih is the senior vice president of scientific affairs at Autism Speaks in the United States.

work to be done. Although many countries have inclusive laws and policies on paper, in practice, children with developmental delays, behavioral disorders, or disabilities are often excluded from mainstream education, he said. Shih credited this contrast to a gap between policy and implementation. He emphasized the importance of recognizing that children with disabilities are children first—their disability is not their identity. Shih underscored that it is therefore critical to include children in the existing system, particularly in the context of the United Nations Sustainable Development Goals (UN SDGs).

SPECIAL NEEDS, SPECIAL RIGHTS

Donald Wertlieb warned participants about the misleading notion of “margins,”² stating that children with developmental delays and disabilities can be anywhere from 5 to 40 percent of a country’s population. A conservative estimate of 20 percent is still a large “margin,” he said, indicating that these children should be more prominently included in global efforts to build healthy, prosperous societies. He also shared his interest in connecting the dots between the United Nations Convention on the Rights of the Child (UN CRC) and the United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), and suggested that a comparison of the UN SDGs, the UN CRC, and the UN CRPD would be an extremely valuable undertaking.

Wertlieb stated that the world is at a tipping point, with numerous reports and policies elevating the visibility of children with disabilities (see Box 5-1); at the same time, he pondered what children gain or lose by being on a “laundry list” of vulnerable or marginalized populations.

Wertlieb highlighted four transformative trends. First, he noted the growing number of children living with disabilities. Overall, these children make up between 5 and 25 percent of a country’s population. According to UNICEF’s State of the World’s Children report released in 2013, 93 million children worldwide are living with disabilities (UNICEF, 2013). Wertlieb celebrated the progress made in reducing child mortality, but he urged researchers and decision makers to acknowledge new morbidity. With increased infant survival, he said, many children have disabilities that threaten to compromise their health and functioning. Second, he discussed a shift from medical models to bio-psycho-socio-cultural models. Third, a movement from narrow deficit models to holistic, ecological models that embrace strengths, as well as promotive and protective factors. Lastly, he discussed replacing charity-based approaches with

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² Donald Wertlieb works with the Partnership for Early Childhood Development and Disability Rights and is based in the United States.

rights-based frameworks. On this last point, he said there is “less focus on handouts and more attention to ‘hand-ups,’” as a way to cultivate human capital and invest in a stronger society.

Wertlieb and Vibha Krishnamurthy outlined a path to achieving the UN SDGs that includes cross-sectoral integration, collaboration and interoperability, and triple twin tracking.³ Based on her work in Mumbai, India, Krishnamurthy stated that when disability is presented to communities as a special issue that care providers must face, they are usually overwhelmed. However, when framing the conversation by saying children with and without disabilities both benefit from early screenings and intervention, the task is perceived as less daunting.

Twin-track I, “mainstreaming,” involves harmonizing disability policies and services with universal services and policies. According to

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³ Vibha Krishnamurthy is founder and director of the Ummeed Child Development Center in Mumbai, India.

Krishnamurthy, this means placing children with disabilities in the context of child development in general while ensuring practitioners provide the special services they need. In the Ummeed Center’s Early Childhood Development and Disability Program, practitioners do this by training health workers to promote early child development in families and communities, detect delays and disabilities as early as possible, and provide referrals to specialized services such as hearing tests and wheelchair providers.

To describe twin-track II, coordinating child/family-centered and community-based care, Krishnamurthy reinforced the trend of moving from a deficit-based approach to a strengths-based approach and read a quote from Poor Economics (Banerjee and Duflo, 2011):

For her, it is critical for researchers and decision makers to realize that families are the experts in their own lives and that they will ultimately make a difference in their communities. This is an important consideration when building capacity for low- and middle-income countries (LMICs), she said.

Krishnamurthy then described twin-track III, integrating special knowledge of children from birth to age 3 with more traditional knowledge of older children and adults. She stated that this track should transfer the knowledge researchers have on young children to the education setting, as well as to young adults, as a way to help with the transition out of childhood to adulthood. Improving the lives of the most vulnerable people in society will make things better for everyone, she said. Krishnamurthy recommended looking past survival toward developmental outcomes, and building capacity in LMICs with an emphasis on family-centered and strengths-based approaches.

EARLY CHILDHOOD INTERVENTION: GLOBAL SURVEY RESULTS

Hollie Hix-Small defined early childhood interventions (ECIs) as interventions for children ages 0 to 3 or 5 who are living with disabilities or developmental delays,⁴ are malnourished, have low birth weight, or have chronic illnesses. These interventions are also provided to children

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⁴ Hollie Hix-Small is an assistant professor at Portland State University and an ECI consultant from the United States.

who are at increased risk for delay due to family status, live in conflict or are displaced, or live in extreme poverty. She stated that numerous professionals and paraprofessionals provide ECI services to these children that are individualized, intensive, family centered, team based, evidence informed, outcome driven, and contextualized. Hix-Small said that the bedrock of ECI is having a team around the child. In the best models, the early interventionist takes a lead role and is supported by professionals from other disciplines, she said. The early interventionist works with the family within an ecological context and receives support from physical therapists, nutritionists, and speech and language pathologists, among other specialists.

Hix-Small presented a global survey she conducted in partnership with Emily Vargas-Baron to understand the state of ECI around the world.⁵ The exploratory study aimed to document ECI services around the world, identify regional differences in programming, and make recommendations for developing and strengthening ECI systems. The survey, a collaboration between Open Society Foundations–London and the International Society on Early Intervention, was administered between December 2013 and July 2014. Hix-Small said surveys were available in English and French with online and offline versions, and were composed of 38 questions (see Box 5-2).

Hix-Small and Vargas-Baron received surveys from 392 respondents across 99 countries, but they eliminated some submissions because a few countries misunderstood “early childhood intervention services” and instead responded in regard to early childhood development services. In the end, the sample contained 81 countries. Fifty-five percent of countries from Europe were represented, 40 percent from Asia, 25 percent each from Africa and the Americas, and 16 percent from Oceana, said Hix-Small. Results showed that of the 81 countries, ECI was a high priority for 16 percent, a moderate priority for 41 percent, a low priority for 26 percent, and not a priority at all for the remaining 17 percent of countries. Hix-Small said that, overall, Asian countries reported ECI as a lower priority than the average countries in other regions.⁶

Hix-Small presented a recommended developmental pathway for the creation of ECI services that starts with intersectorial collaboration and ends with phased expansion. This pathway, presented in full in Figure 5-1, draws on Vargas-Baron’s extensive experience in developing ECI services. Additional recommendations for developing ECI services as prevented by Hix-Small are included in Box 5-3.

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⁵ Emily Vargas-Baron is director of the RISE Institute.

⁶ Data are currently unpublished, but will soon be made available on the RISE Institute website: http://www.riseinstitute.org/about.htm (accessed March 1, 2016).

Key messages from the survey as reported by Hix-Small include that several countries are developing broad and strong ECI foundations but that international, regional, and national support is needed to develop sustainable systems. She also said that countries have differing priorities and starting points, so culturally and contextually relevant examples from policy to practice are needed.

POLICY AND PROGRAM PERSPECTIVES FROM ALBANIA

Ariel Como discussed the national context for children with developmental delays, disabilities, and mental health issues in Albania.⁷ According to Como, Albania has a population of almost 3 million people, one-fifth of whom are children under the age of 14. While reports may indicate that Albania has a set of laws governing policy and service delivery for all children, Como stated that an enabling environment for early childhood development has not been streamlined. He said that limited mechanisms are in place to coordinate across sectors to provide services for the holistic development of children under the age of 6 years. Examining mental health more broadly, Como stated that Albania has very few mental health professionals and a high number of people in institutions. He reasoned that so many people are in institutionalized care because of a lack of community services. He finished by stating that challenges for Albania include scaling services, building capacity, a lack of guidance on what practices to implement, and research gaps.

Liri Berisha described her work with the Albanian Children’s Foundation (ACF).⁸ Founded in 1996, the ACF has provided services to children with autism since 2006. In 2006, there were very few services available for children with autism, and according to Berisha, stigma was rampant in Albanian society. Moreover, families were burdened by caring for children with autism without any training or support from the state. Berisha

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⁷ Ariel Como is the national coordinator of Albania for the SEAN network and is an advisor to the Albanian Ministry of Health.

⁸ Liri Berisha is president of the Albanian Children’s Foundation (ACF) and former first lady of Albania.

said that the ACF focuses on early assessment and intervention services for children up to 14 years old. Two regional centers for autism provide treatment for children with autism and trainings for young professional therapists and those working with children in health care or educational facilities. Since inception, the ACF holds yearly intensive autism awareness campaigns spearheaded by parents of children with autism. In addition to training service providers, the organization publishes instructional materials and offers a 6-hour training guide for parents to care for their children and promote optimal development.

Berisha credits the ACF’s success to several factors, starting with their partnership and coordination with parents, who are involved in each step of the organization’s processes. Additionally, the ACF has a high standard of quality comparable to models in developing countries, she said. Thirdly, Berisha highlighted the organization’s transparent fundraising mechanism and openness to the community, which have spurred donations. The ACF also works in close collaboration with pediatricians, teachers, and psychologists to enhance knowledge, training, and high-quality publications, stated Berisha. Finally, she attributed the ACF’s high impact to the organization’s dedication to data and research to inform their work.

POLICY AND RESEARCH PERSPECTIVES FROM MACEDONIA

Lidija Krstevska Dojcinovska discussed the laws and policies for children with disabilities in Macedonia across the areas of education, social protection, and health care. According to Dojcinovska, while there is no specific law on inclusive education in Macedonia, existing laws contain the principles that support it. The Law on Primary Education (2007) provides the right for children with developmental delays and disabilities to enroll in mainstream education or attend special schools. Prior to this law in 2008, children with these needs had to be enrolled in special schools. The National Strategy for the Development of Education 2005–2015 (The Parliament of the Republic of Macedonia, 2004) aimed to reduce discrimination in schools and increase support for children with disabilities in mainstream schools, as did the 2008 National Strategy for Deinstitutionalization (Government of FYR Macedonia, 2008). The National Strategy for Equalization of the Rights of People with Disabilities of 2010–2018 mandates the employment of special educators in mainstream schools along with continuous teacher training (Government of FYR Macedonia, 2010). Dojcinovska said that every document states that children with disabilities have (1) the same right to quality education as children without disabilities; (2) the right to choose and have an inclusive environment; and (3) are entitled to specific resources and expertise to satisfy their educational needs. Yet, these policies have not been translated on the ground, said Dojcinovska. While the legal framework for inclusive education is

clear, there are not enough support systems for teachers and children with disabilities. Moreover, teachers do not receive enough training to work with these special needs students, and there is insufficient funding to develop services at the central and local levels.

In terms of health care and social protection, Dojcinovska said that laws in Macedonia provide for the early identification of children with disabilities, but that the country does not have an adequate strategy for early intervention. She did note that Macedonia has centers for social work; development counseling offices to monitor children born at risk of developing a developmental delay or disability; and speech therapists, psychologists, and physical therapists to diagnose and treat certain conditions. Dojcinovska stated that Macedonia faces several challenges including the early identification of delays and disabilities, which often occurs very late, and is unaccompanied by support services. Parents also avoid screenings so their child is not labeled, said Dojcinovska. There are challenges in the diagnostic and treatment process as well, she explained, where there is still limited knowledge about the treatment of some conditions such as autism, and professionals sometimes resort to disease classification rather than needs assessment. Finally, she said that more financial resources are needed for family support and the development of services at the local level.

Tatjana Zorcec presented preliminary results from the SEAN Caregiver Needs Study in Macedonia.⁹ She said that the most alarming finding was that more than 60 percent of children with autism in Macedonia are nonverbal or minimally verbal (use single words only). Another finding was that parents received most information about autism from the Internet rather than their child’s doctor, teacher, or other parents of children with autism, and that caring for these children puts significant financial strain on families as they pay for most services out of pocket. According to Zorcec, Macedonia has experienced a rapid increase in the number of children with autism, and there are insufficient resources available to support these children and their families. Yet there are some positive aspects in this situation, said Zorcec, including raised awareness about autism, some inclusion of children with autism in mainstream education, and plans to open a center for autism diagnosis.

POLICY PERSPECTIVE FROM GEORGIA

Maia Buchukuri highlighted Georgia’s transition from institutionalization to social integration of children with special needs.¹⁰ Buchukuri

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⁹ Tatjana Zorcec is the national coordinator for Autism for Macedonia.

¹⁰ Maia Buchukuri is head of the Social Program Division, Ministry of Labor, Health, and Social Affairs in Georgia.

stated that of Georgia’s population of 4 million, there are 10,000 children with disabilities and nearly 25,000 orphans.¹¹ The approach to child care reform in the country involved deinstitutionalization and reductions in abandonment via the development of alternative care and family support services. According to Buchukuri, several large institutions were closed from 2004 to 2015, resulting in a reduction in the number of children in institutionalized care from 5,500 to 200.

The ECI model in Georgia is interdisciplinary and multisectorial, said Buchukuri. The main pillars of the model are early detection, surveillance, and referral. Early childhood education and ECI are managed by the Ministry of Labor, Health, and Social Affairs, and the transition to preschool institutions and educational services is spearheaded by the Ministry of Science and Education. Buchukuri highlighted several successes including the development and implementation of several ECI services in the capital, Tbilisi, and other regions of Georgia. She also indicated Georgia has a sustainable funding system and a joint vision from several ministries regarding early child development, which has resulted in an annual increase in the number of children involved in ECI programs.

A REGIONAL PERSPECTIVE ON PREVENTION

Bettina Schwethelm provided UNICEF’s strategies to address the complex needs of children with developmental delays and disabilities in Central and Eastern Europe and the Commonwealth of Independent States (CEE/CIS)¹²:

• Use home visiting services for the prevention, early identification, referral, and support to families of special needs children.
• Introduce developmental pediatrics to strengthen family-centered assessment and intervention.
• Promote social inclusion and learning in preschool settings.
• Advocate nationally for greater social inclusion.

Through the home visiting program that began in the region in 2011, Schwethelm said UNICEF is promoting the idea of comprehensive development of all young children and a continuum of care through ongoing case management, as presented by Krishnamurthy, Hix-Small, and Wertlieb. Content for the program is steeped in early child develop-

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¹¹ See http://ssa.gov.ge/index.php?lang_id=ENG&sec_id=610 (accessed March 1, 2016).

¹² Bettina Schwethelm is an independent senior consultant who provides technical advice and guidance to the Young Child Health and Wellbeing program of the UNICEF Regional Office for CEE/CIS.

ment, prioritizes the prevention of developmental difficulties, and provides links to services, she said. To strengthen home visitor capacity, UNICEF, in partnership with the International Step by Step Association, developed regional guidance as well as 14 resource modules. Modules focus on developmental difficulties, attachment, stigma and discrimination, cross-sectorial coordination, and child maltreatment, among others. Schwethelm stated that the home visiting service has been evaluated in Bosnia and Herzegovina and results showed a positive effect on child outcomes and parent–child relationships (Yousafzai and Rasheed, 2015).

In 2013–2014, UNICEF mapped the available ECI resources in CEE/CIS across 21 countries and found that quality early identification and intervention was lacking in many countries (Ertem, 2015). Together with the Developmental Pediatrics Department of Ankara University, UNICEF has provided orientation training on developmental pediatrics and family-centered services and continued support to professionals in 10 countries of the region.

BREAKOUT SESSION ON CHILDREN WITH DEVELOPMENTAL DELAYS AND DISABILITIES

Shih summarized discussions from the breakout group on children with developmental delays and disabilities. In this breakout group, participants heard from Mariana Nikolova, another representative of the Karin Dom Foundation in Bulgaria. According to her, oftentimes governments or funders provide financial support for programs without forethought on how to continue services. For example, she said that in one area, funds were provided to train support personnel and therapists, but there was no job security for them once trained. After 3 months, they had to leave their positions. This reality disincentivizes prospective participants, she said. Another participant discussed World Bank investments and how money from the bank is given to local governments for disbursement. Yet there is no agreement within the government in terms of how to allocate resources to engender the outcomes intended by the funders.

During the discussion, Shih said participants highlighted how definitions of early childhood intervention and disability may vary, underscoring the need for a greater understanding of context for programming. Part of the context to be considered includes leadership, evaluation, and center- versus family-based models of intervention. Participants discussed the need for vertical and horizontal alignment of leadership requiring top-down or bottom-up approaches as well as cross-sector transfers of skills and lessons learned. Some participants noted that oftentimes programs and services do not have a built-in evaluation component. These participants remarked that strategic planners are removed from realities on the

ground and are not informed about the challenges families face on a daily basis. Finally, several participants thought a center-based model would not reach all children living in families. Instead, a few participants said implementers should consider a community-based, capacity-building approach as they can be more cost-effective, encourage commitment at all levels as well as local ownership of programs, and empower families and community stakeholders.