Every child counts: understanding the needs
and perspectives of children with disabilities in
the State of Palestine
Children with disabilities (CWDs) are one of the most marginalised and excluded groups of children. Defined and judged by what they lack, rather than what they have, they experience widespread violations of their rights that result not from the intrinsic nature of disability but from the social exclusion that arises from it (UNICEF, 2013). Palestinian CWDs typically face a particularly dire situation, given the levels of cultural stigma directed at disability and the protracted conflict that surrounds them, which has devastated infrastructure, fractured the economy and overwhelmed service providers. This situation analysis and needs assessment, commissioned by UNICEF State of Palestine, adopts a lifecycle approach that captures difference at the individual, family and community levels. Paying attention to differences in age, gender, disability type and family characteristics, our study explores how Palestinian CWDs are marginalised and excluded, the obstacles they face in fulfilling their rights and what mechanisms might be put into place by the government, donors and non-governmental organisations (NGos), communities and families to better support their development and their rights.
Mixed methods approach
ODI's mixed-methods approach combined an extensive literature review with primary quantitative and qualitative data in seven governorates in Gaza and the West Bank. The literature review, which pulled together national reports about disability in general and CWDs in particular, allowed us to assess the evidence base and design our research instruments to augment the known and address the unknown. Critically, as not all CWDs are registered with the Ministry of Social Development (MOSD), meaning existent reports likely have significant blind spots, our quantitative sample used both government and non-government databases and explicitly aimed to be inclusive of a wide variety of children. The 851 children (and/or their caregivers) who completed our survey comprised boys and girls, children of varying ages and in- and out-of-school children. It also included a wide variety of disability types.
Given that Palestinian culture tends to silence both children and those with disabilities, our qualitative work aimed to capture the unique voices of CWDs. To this end, we used a wide variety of adaptable participatory tools, recruited researchers with extensive experience working with CWDs and brought on board sign language interpreters to reach out to children with speech and hearing difficulties. While we acknowledge that, given limited resources, our research could not achieve full inclusivity, we believe it better captures the diversity of CWDs' experiences and needs than any research in Palestine thus far. In total, our qualitative sample included 62 key informants at local and national levels and individual and group interviews with 241 individuals who were either CWDs or siblings/caregivers of CWDs.
Once the fieldwork was completed—and after the preliminary analysis was available—ODI organised and facilitated a number of regional and central-level participatory workshops in each area (four in Gaza and three in the West Bank) in order to be able to undertake a causal and capacity gap analysis to further enrich research findings. These workshops engaged participants to give their perspective on findings and to generate additional information about the causes of poor access to services and support.
Policy, institutional and legal landscapes for Palestinian children with disabilities
While the Palestinian Disability Law dates to 1999, and ostensibly guarantees Palestinians with disabilities the same rights as those without disabilities, the disability-related legal framework is generally regarded as unspecific and weak. However, the sector strategic plans adopted by the Palestinian Authority since 2011 have begun to operationalise government responsibilities for meeting the rights of citizens with disability. For example, the Ministry of Education and Higher Education (MOEHE) is moving towards inclusive education and the Ministry of Health (MOH) provides all citizens with a disability with a comprehensive set of basic health care services. Critical to understanding both the successes and the failures of these plans is the fragmented way in which services are delivered in Palestine. Basic services are provided by both the government (for non-refugees) and the UN Relief and Works Agency for Palestine Refugees in the Near East (UNRWA) (for refugees), and disability-specific services, ranging from community-based rehabilitation (CBR) to special education, are most often offered by a crowded field of NGOs, usually under contract to the government and UNRWA.
Challenges facing children with disabilities and their caregivers
Given that our sample of CWDs was designed to be more representative than those of previous surveys, as it drew on both MOSD and NGO beneficiary lists, several sample characteristics represent key findings in their own right. For example, while MOSD registries listed less than 10% of CWDs as multiply disabled, we found that 41.8% of CWDs had more than one type of disability. We also found it was very common for families to have more than one PWD. Of all the households included in our study, 41.4% had at least one person with disability (PWD) in addition to the sampled CWD. Driven by high rates of consanguineous marriage and pollution, and made worse by poor antenatal, delivery and newborn care, in most cases (59.4%) the second PWD was another child. Families in Gaza were especially likely to have more than one CWD. As hinted at by our previous research on the Palestinian National Cash Transfer Programme (PNCTP) (Pereznieto et al. 20014), we also found families with CWDs were extremely likely to be poor. Nearly 40% had monthly incomes that were about half of the extreme poverty line.
Children's limited access to services
Both our quantitative and qualitative research found Palestinian CWDs were regularly denied access to the services guaranteed to them by law. For example, while most (53%) live in families that receive some cash assistance from MOSD—which is an artefact of the extreme poverty in which they live—very few receive any sort of disability-targeted assistance or even disability-related education from the ministry tasked with ensuring their well-being. Given the high costs associated with disability, for services and products ranging from transportation to nappies, families of CWDs almost universally reported a hard time making ends meet. Many of the children who required the most expensive support, such as wheelchairs and hearing aids, were simply forced to do without.
Families, especially those in the West Bank, also reported difficulty with accessing quality education for their CWDs—although children with vision and hearing impairments experience relatively less difficulty than children with other sorts of disabilities. Our research found that because the stigma directed at CWDs by their peers—and even their teachers—is pervasive, schools are poorly adapted, transportation to and from school is expensive and specialised learning materials are often not available, CWDs are quite likely to drop out of school before they have completed basic education. The average age at which children in our sample left school was only 11.85. Children with cognitive and multiple disabilities are particularly likely to be denied an education, as are girls once they reach puberty.
While all CWDs are putatively guaranteed free health insurance and access to a range of CBR services, our research also found access to health care was lacking. In addition to the fact that the basic package of available health services is not tailored to address the specific health care needs of those with disabilities, respondents reported that insurance did not cover medication, medical disposables or transport to and from medical appointments, and—critically—the coordination to facilitate follow-up and improve continuity of care is almost completely lacking. Furthermore, while our qualitative work found families were overall quite happy with the care their children received at more specialised institutions, children and caregivers said mainstream medical providers were at times even hostile to CWDs, particularly those born with disabilities rather than acquiring them 'heroically' in conflict.
Respondents reported that a significant factor in children's lack of access to services was the poorly adapted Palestinian environment. Not only are schools and health clinics often unaccommodating to those with special needs, but also specialised transport is essentially unavailable and private homes often un-adaptable, given over-crowding and large family sizes. This often means that home environments challenge even children with vision and hearing difficulties—not only those with mobility constraints.
Family and community life
Our research found that caring for CWDs was a burden born disproportionately by mothers. While fathers sometimes provide complementary care, Palestinian culture does not encourage the day-to-day involvement of fathers—especially with regard to physical care of children and especially girls. Indeed, several girls with disabilities reported that their fathers were actively hostile towards them. Furthermore, the overwhelming majority of mothers in our qualitative sample tended to work extremely long hours with little opportunity for respite. Often, the only 'reward' for their efforts is blame for producing a `damaged' child. Gender-based violence is common, with both in-laws and husbands emotionally, verbally and physically abusing mothers, and in some cases mothers of CWDs are forced to accommodate co-wives as husbands seek to produce healthy children. Our qualitative research found circumstances were especially fraught for mothers who had more than one CWD.
Families' awareness of the rights and services to which their children are entitled is low. Nearly nine in 10, for example, were unaware there were disability-related forums and nearly half did not know their children were eligible for CBR. Our qualitative work found that in part this was because parents either found it difficult to admit that their children had a disability (most common for fathers) or had been unable to obtain an accurate diagnosis for their children (most common for children who appeared to be on the autism spectrum). It was compounded by many parents' beliefs that their children could be 'cured'. CWDs had relatively more awareness of their rights. However, given their negative experiences at school and with the health care system, they tended to not be only hesitant about demanding access but also adamant that they had fewer rights than their non-disabled peers and siblings.
Our research found the stigma surrounding disability in Palestine was both pervasive and strong. Outside of the home—and sometimes even within it—CWDs tend to encounter very little actual support. Indeed, they are far more likely to encounter hostility and abuse. Over a third of children in our quantitative research reported that they avoided doing things simply because they could not bear the attitudes of those in the community and only 5% said they could always rely on their friends. Our qualitative work found that, for those CWDs who were able to access programming, including schooling that provided support and fostered inclusivity the results could be transformational. It also, unfortunately, found such programming was largely unavailable—particularly for the children with the most severe disabilities, girls and those living in more remote areas.
Barriers to service uptake
As noted above, our gap analysis workshops allowed us to closely explore capacity shortcomings with key disability stakeholders. While responses were many and varied, in part depending on where the stakeholder worked and which services he/she provided, they largely converged around six main themes. Stakeholders were, for example, deeply concerned about the lack of any sort of comprehensive registration system for CWDs. Not only is there no national database to help coordinate and track needs and services, but also, even within sector, there is little attempt to ascertain the size and shape of the population needing service. For instance, government schools do not keep records of which children have disabilities. Stakeholders observed that this lack of coordination was made worse by the highly fragmented provision of disability-related services and agreed that lack of political will to address disability in a coherent, cohesive manner was ultimately more of an issue than budget constraints.
Workshop participants also noted insufficient capacity of adapted infrastructure and staff. Schools and health clinics are often not accessible; even when they are they are often only partially so, leaving children without access to toilets or computers labs. Furthermore, special education teachers are rare and regular classroom teachers do not often have any training or support to teach those with disabilities. Doctors and medical staff are similarly ill equipped. Most primary care providers are not trained to diagnose disability and few have an understanding of the service landscape that could be brought to bear to meet individual children's needs. Indeed, diagnostic capacity is low across sectors. Screenings to detect hearing and vision difficulties, for example, do not take place in infancy and early childhood, but when children enter Grade 1. There is no system in place to 'catch' children with more complex developmental issues such as autism.
Conclusions and recommendations
Our research finds Palestinian CWDs are highly vulnerable. They are very likely to be extremely poor, woefully under-supported to realise their rights to an appropriately tailored education and health care, have very few opportunities to participate in the social activities required for healthy development and poorly protected from abuse and exploitation. Both our quantitative and qualitative work, like the body of more narrowly targeted research that preceded it, finds CWDs' health, schooling and wellbeing outcomes are markedly worse than those of their siblings and peers without disabilities. Our research finds the families of CWDs—and especially their mothers—are also highly vulnerable. Given the dearth of disability-targeted services and the discriminatory social norms surrounding disability in Palestine, caregivers are not only largely left without respite, even when they have children with severe disabilities or several children with disabilities, but also often marginalised, isolated and abused, even by their own family members. Indeed, even the health care and educational providers meant to provide service sometimes perpetuate such stigma.
The vulnerabilities facing Palestinian CWDs are often overlapping, leaving some children at particular risk. For example, those living in rural areas have far less access to services, because of transportation deficits. Bedouin children appear particularly vulnerable. Not only are their families the least likely to have easy access to services, but also our research finds their communities have especially limited awareness about disability rights and the care needs of CWDs. Adolescent girls with disability are also at heightened risk of neglect and abuse. The restrictive gender norms of the broader community means they are often denied their right to an education and the extreme stigma directed at disability, which plays into notions of family honour and can prevent their siblings without disabilities from finding marriage partners, means they are often hidden even within the family. Risks are also multiplied where families have several CWDs, which we found to be quite common.
Our research finds the social assistance provided to CWDs is grossly inadequate. The PNCTP, laudable at reducing the depth of poverty on a national level, is far from adequate for families burdened by the extra costs of caring for CWDs since benefit levels are not sensitive to disability-related need. Similarly, health insurance, because it is targeted at mainstream populations and takes no account of disability-related health needs, is useful but insufficient. Families of CWDs must purchase nappies and medication out-of-pocket and children all too often must do without the wheelchairs and hearing aids they need—sometimes because their families literally cannot make ends meet and sometimes because their needs are deprioritised as they are seen as less valuable than their siblings without disabilities.
Access to basic social services is also limited, especially for children with severe or intellectual disabilities. Public schools are over-crowded, poorly adapted and largely lacking the specialised teachers and teaching materials that make inclusion possible. Bullying—even from teachers—appears to be rampant, and transportation to and from school very expensive. While our research found children in tailored educational settings generally have better psychosocial outcomes than those at mainstream schools, demand for such education far outstrips supply. Health care too falls short. Prevention efforts are negligible, which is glaring given the high incidence of disability owing to cousin-marriage and birth-injury, and early diagnosis and intervention are comparatively rare, particularly given the high number of children with congenital disabilities.
Critically, our research finds Palestinian CWDs effectively exist in a 'no man's land'. While MOSD is ostensibly tasked with overseeing the needs of all citizens with disabilities, it has no particular mandate to serve children, despite the cascading implications of neglect during childhood, and is poorly equipped to drive the cross-sector coordination CWDs need to realise their rights and meet their potential. Indeed, because of the extremely fragmented way in which disability services in Palestine are delivered, with the government and UNWRA sharing space with literally hundreds of NGOs, families seeking services are effectively abandoned to their own devices to map the service landscape and arrange interventions for their children. The end result is CWDs remain largely invisible.
Based on our research, we make the following recommendations to better address the needs of Palestinian CWDs and the families that care for them:
● Raise policy-makers and communities' awareness of disability by revising the disability law, which is both dated and pejoratively named. The PDL should be revised to better align with international conventions to further progress towards the realisation of disability rights. Donor resources should be channelled towards improving the way information on disability and services for people with disabilities is communicated to service providers and communities.
● Involve PWDs and their families to ensure policies and programmes are better centred around users' needs. Local governments and MOSD offices could take a lead role in involving families more actively in programme design, monitoring and evaluation, including through establishing feedback and participatory accountability mechanisms (e.g. citizen score card exercises).
● Operationalise the disability law by developing a national strategy for disability prevention, early detection and management. This should include adopting a common working definition of disability with clear indicators for monitoring prevalence, risk factors and outcomes. It should also translate the law into a concrete set of services and support for children with different types of disabilities. The MOSD should seek to revitalise the Coordinating Council for Disabilities and through it facilitate coordination between ministries and service providers to improve capacity, awareness and practice with regard to services for CWDs.
● Invest in strengthened data collection related to CWDs—and minimise both gaps and duplication—by strengthening the registration of CWDs. The government should make immediate efforts to build an accurate database of all children with developmental delays and disabilities, using Gaza's area-wide survey as a model and drawing on the efforts of Save the Children with MOSD in the West Bank. Data collection should cover prevention efforts, prevalence by age and gender, location of different disability types and access to services.
● Strengthen the disability mandate within government by enhancing coordination. Implementation of the current law is poor in part because MOSD remains under-equipped to drive a cross-ministerial mandate. Disability-related concerns should be handled but at the supra-ministry level to facilitate greater coordination, setting and monitoring of minimum quality standards for all facilities that serve CWDs—including not only those providing disability-related services but also kindergartens, neonatal and delivery centres, etc. One option is to strengthen the mandate of and adequately resource the Coordinating Council for Disabilities so it can oversee and hold ministries accountable for their actions and services.
● Allocate consistent fiscal space for disability-related needs and make longer-term commitments to purchase services from NGOs and the private sector when they are not publicly available. This will allow the government to better meet its existent obligations to CWDs but also stabilise the budgets of nongovernmental providers. More systematic information on budget resources will also make it possible to identify crucial funding gaps.
● Step up efforts to prevent disability. Our research suggests many childhood disabilities are preventable, as they result from consanguineous marriage and/or poor antenatal and neonatal health care. Prevention efforts should include investments in pre-marriage genetic testing—using religious leaders and institutions to promote increased uptake, as well as pre-conception counselling and better antenatal care. Efforts also need to be directed towards ensuring hospitals have the equipment to prevent permanent disability (e.g. incubators) and trained health care professionals capable of following evidence-based guidelines and protocols on neonatal care.
● Improve early detection and intervention. Train the primary care physicians and nurses who come in contact with infants to assess child development using harmonised standards and instruments and to detect early signs of developmental delay and disability. This should include formal screening tests for all children at key developmental junctures in the first three years of life, as well as informal screens at every point of contact. Consistent referral systems should be built to ensure at-risk children are then seen in a timely manner by experts. Since the most vulnerable children often live in hard-to-reach areas, home visits should be made to those not seen in clinic to ensure their development is on track.
● Educate parents on early detection and support for CWDs. Use well-child visits (whether in clinics or at home) to educate parents on child development and the importance of positive parenting, as well as on how to provide supportive therapies at home. The MOH could support the development of a manual and training of trainers in which hospital staff develop resources for local health providers or social workers to share this knowledge with families of CWDs.
● Implement community- and facility-based early intervention programmes. The MOH working in coordination with the MOSD can play a major role through health and communication for development as well as early childhood development services to support families and practitioners in this area. Focusing on school-age children can often be too late and miss a critical opportunity for appropriate early intervention.
● Support pre-primary and primary teachers to recognise signs of developmental delay and disability and build systems that facilitate their coordination with health care providers and social workers. This can be supported by the case management system currently being developed by Save the Children with MOSD, but information on existing services needs to become available on a website and in printed form so social workers and local service providers—including teachers—can share it with families. A good model could be the UK National Health Service website, which provides clear information on early detection, support needed and services available, and could be adapted to the Palestinian context.
● Invest in community education to reduce stigma. Using both traditional (e.g. mosques) and new (e.g. TV) outreach channels, work to help the broader community understand disability is neither contagious nor a sign of dishonour and PWDs have needs, rights and dreams equal to their own. Consider supporting communication campaigns to talk about ability. Also importantly, incorporate citizenship education that includes sensitisation on equality across different dimensions—particularly disability—into school curricula so children from a young age not only become more supportive of their peers with disabilities but also contribute to changing perceptions in the community. MOEHE can spearhead this initiative. Further, given Palestine's obligations under the CRPD, it is important to improve advocacy with all relevant ministries on behalf of CWDs. The CRPD state party drafting process is currently underway; it is important to be able to show progress on key areas between state reports.
● Map and align service providers. Given the fractured nature of service provision in Palestine, with the government, a detailed mapping exercise will help identify gaps and overlaps and allow for a more rational allocation of resources. It will also serve as the backbone of future plans to establish a continuum of care for CWDs, who are very often lost between providers. This activity could be spearheaded by MOSD based on the mapping of services developed recently by Save the Children and some of the information presented in this report.
● Direct more human resources to disability to focus on the fact that CWDS are first and foremost children. Current social work caseloads are more than 10 times higher than they are in the UK (several hundred versus 15) and disability receives no particular focus. Furthermore, not only is there little coordination between schools, health care providers and social workers but also, given the fragmented, NGO-driven nature of the rehabilitation sector, the staff with whom CWDs interact on a regular basis are often trained only on very specific disabilities and not on the broader needs of children. The effort requires more resources, and would benefit from donor grants to train and resource social workers, though their recruitment and salaries should be included in the government's budget to guarantee sustainability over time.
● Improve and tailor social protection for CWDs. Disability can be expensive. Furthermore, stigma means that, even when families are provided resources, CWDs can be left out. We suggest CWDs be provided with categorical, rather than means-tested, support to ensure their disability-specific needs are met—possibly using the PNCTP as a delivery mechanism. This would particularly help the many families that have multiple children with disability or whose children have multiple disabilities. Cash should be provided to mothers until children turn 18—at which point it should be provided directly to the young adult with disability (where developmentally appropriate). We also suggest an in-kind support package for CWDs that covers medication, transport, adapted educational materials, care and—for older CWDs—economic empowerment programming. Support must be provided in a continuous, predictable manner, CWDs with congenital disabilities must not be not ignored in favour of their peers disabled by accident or conflict and children with 'hidden' disabilities, such as autism or cognitive impairments, must be provided with benefits. In addition to categorical targeting based on disabilities, if families are also within poverty estimates of the PNCTP as per the public targeting, they should also receive the additional benefit to ensure they can meet their needs.
● Rethink the inclusive education approach. Expecting schools in Palestine to serve the needs of CWDs is currently unrealistic, but rather something to work towards in the medium and long term. The lack of resources available for specialised teachers, materials and infrastructure effectively condemns CWDs to poor learning outcomes—especially in primary and secondary schools. Dedicated schools may provide a good alternative in the short to medium term, especially for children with the most complex needs, and must include free transportation.
● Accelerate efforts to make inclusive education a positive experience. This must include efforts to make school buildings, classrooms, play spaces and WASH facilities fully accessible to CWDs but also expanding educational opportunities for teachers. MOEHE should include this as part of its plans to roll out the Inclusive Education Policy, with technical support from agencies such as UNESCO. Disability should also be integrated into school health programmes, with counsellors available to help address CWDs' psychosocial needs and awareness-raising programmes. In addition, citizenship education for all students should be directed at reducing the stigma and hostility all too often meted out to CWDs within the school environment.
● Step up efforts to provide tailored education for the youngest and oldest CWDs. Pre-primary education in Palestine is almost exclusively provided by the private and NGO sectors. The government needs to ensure private spaces, curricula and teaching methods are adapted for CWDs—and schools enrol CWDs and help them achieve good outcomes. Attention also needs to be directed to helping older CWDs transition from specialised schools to public schools and to providing TVET to help CWDs achieve an independent, more financially secure adulthood.
● Expand health insurance to meet the real needs of CWDs. Health legislation needs to be strengthened with respect to PWDs, including specific guidance for CWDs, in order to provide a strong mandate for service providers and to underpin a broader health insurance. We suggest health insurance meet all of CWDs medically related needs—including the provision and maintenance of all assistive technologies required for their optimal development as well as transport to and from medical appointments. This effort needs to be spearheaded by MOH in coordination with OPDs. The costs of disability-related health care must be shifted into annual budgets to eliminate the current system's unsustainable short-term approach. While there are budgetary constraints, the political will to prioritise this issue, plus improvements in the overall efficiency of the health sector budget, could help create fiscal space for such insurance.
● Increase the capacity of OPDs to diagnose and treat CWDs by providing training and exposure to state-of-the-art practices and consistent financial support. The first step is for MOSD to update and publish relevant guidelines, which it has identified as one of its priorities. Particular efforts should be made to learn from, and expand, the good practice models that offer families of CWDs a more holistic, 'one-stop' care experience.
● Adapt physical and information infrastructure for better accessibility. Beginning with providers with a disability mandate (e.g. MOSD, MOH, MOEHE, etc.), and moving on to the broader community, ensure spaces and information are accessible to PWDs. This will include a wide range of concrete adaptations, including ramps, pamphlets in Braille, sign language interpreters at hospitals, etc.
● Provide support for the families of CWDs. Invest, through local governments and CBR, in disability-specific support groups for mothers—possibly led by mothers with older CWDs who have a wealth of experience to share; engage with mothers and fathers—who are often the least supportive; and reach out to Bedouin communities, where stigma is especially high. We also recommend the state provide easily accessible web-based information and diagnostic tools, drawing on good practice from other countries and disability rights NGOs and offer families comprehensive information on child development and care tailored to account for disability—perhaps using social media such as What's App to send regular tips. This should include a comprehensive list of providers and services available, drawing on the mapping exercise above. We also recommend respite care for mothers/families caring for children with severe/multiple disabilities and or multiple children with disabilities, which could entail expanding existing residential services and subsidising community-based respite care options.
● Strengthen the social work network to provide better outreach to CWDs and their families, not only to facilitate access to social services but also to serve as a grievance/complaint mechanism when services are failing, to inform about cases of abuse and negligence and so families feel service providers can be held accountable.
● Address the gender dimensions of disability and disability-related care. Girls with disability, sisters of CWDs and mothers of CWDs often face gender-specific vulnerabilities. Adolescent girls with disabilities are especially unlikely to attend school or be allowed to socialise, given the risk of sexual assault and its associated threat to family honour, and those same girls—and their mothers—are at high risk of intra-familial violence. We suggest more community awareness through communication for development and home visiting by nurses, social workers and disability officers, who should be trained to identify those at risk and refer them to adequate services. Emergency shelters should take account of the needs of those dealing with disability. Currently, referral mechanisms in cases of child abuse are lacking, so these need to be developed—with the support of UNICEF—and take specific account of CWD needs.
● Strengthen the role of international NGOs as champions for CWDs. INGOs which have been actively engaging on the issue of disabilities - such as Save the Children and Diakonia - could play a key role in the donor/ multilateral community, championing the needs and rights of CWDs. They could help coordinate the development of a fit-for-purpose database and management information system, assist with social protection system reforms and facilitate sharing of good practice learning across government agencies and NGOs. Donors could also reach out to the private sector and encourage greater investment in service provision for CWDs (e.g. building on the School for Blind in Hebron model).