Disability in children and adolescents must be integrated into the global health agenda

Growing numbers of children with disability

The low priority accorded to disability is reflected in the lack of data. One recent global analysis estimated that 291 million children and adolescents experience disability due to epilepsy, intellectual disabilities, or sensory impairments.15 But the real impact of childhood disability is not known yet.

Epidemiological evidence so far has been fragmented, limited to prevalence data for specific health conditions. The only source of global evidence, the World Report on Disability, found that about 5% of children experience disability, but the report relied on data from 2004.4 A comprehensive perspective is vital: it should consider a broad list of chronic health conditions with high levels of associated disability that profoundly affect children’s functioning and wellbeing. This will enable appropriate provision of health services.

We explored trends in prevalence and associated disability of a number of common non-communicable diseases and injuries using the Global Burden of Disease as a data source, comparing data from 1990 to 2019.16 Since the list of conditions can be broad, we adopted an approach that limited the number of conditions but was still representative without being exhaustive. We selected the 20 impairments and health conditions with the highest number of years lived with disability, which reflected the level of disability according to Global Burden of Disease data. Infectious diseases, such as malaria, and conditions driven by prevalence rather than disability, such as micronutrient deficiencies, were excluded. In addition, we convened a group of experts in disability to discuss the list and add any conditions or impairments associated with high levels of disability and needing health services. The final list comprised 14 health conditions or impairments, including two large groups of injuries and congenital anomalies.

Results show that for most of the conditions the estimated global prevalence remained virtually unchanged during this period (table 1), but the numbers of children and adolescents living with disability rose substantially owing to population increases. Conditions that exceeded 100 million cases among those aged <20 years include: migraine (196.0 million), injuries (154.7 million), asthma (100.3 million), and hearing impairment (102.3 million). The greatest increase was in migraine (from 159.5 million in 1990 to almost 200 million in 2019). Table 1 shows that the number of years lived with disability for all conditions has also increased substantially since 1990. Full data are available on bmj.com.

These numbers are set to escalate with demographic trends: in low income countries, particularly in sub-Saharan Africa, children under 14 years typically constitute more than 40% of the total population.17 Already, there are nearly 500 million more children and adolescents today than in 1980.

Health systems lack capacity to tackle needs

Despite the numbers needing care, services for children and adolescents with disability are woefully inadequate. Health systems simply lack the capacity to meet demand. Even without available global estimates on unmet needs of children with disability, evidence consistently shows the many barriers to care they face.

Two conventions ratified by most countries—the Convention on the Rights of the Child18 and the Convention on the Rights of Persons with Disabilities19—provide for all children to be entitled to care. Yet in reality, even basic healthcare needs of children with disability are often not met, with a lack of access to primary care or community services.11202122

The rehabilitation services needed to optimise functioning often do not exist or are underdeveloped or under-resourced.11 And when available, services are often costly, not physically inclusive, or accessible only in urban areas.232425 The end result is poor quality of services—an issue often raised by children with disability and their caregivers.2627 An example from India shows underutilisation of rural rehabilitation services because of poor acceptability.28

Children with disability often need particular therapies, assistive technology, or environments to be adapted for them. In many countries, only 5-15% of people who need assistive technology are able to get it, and children are even less likely to receive it than adults.29 For example, in Malawi, only 5% of children with disability attending rehabilitative services receive rehabilitative equipment.20 Limited resources are a key barrier, but the invisibility of children with disability is the root problem of many deficiencies. A lack of evidence and data hinders policy making.30 Another critical issue is the lack of qualified healthcare professionals and medical equipment to tackle specific needs. For example, in Ethiopia, many children with autism and intellectual disability do not receive the care they need because of the lack of training and knowledge of healthcare professionals and the absence of referral mechanisms.31

A 2017 WHO paper noted that the current workforce of skilled rehabilitation professionals in most countries was totally inadequate to serve population needs, with the numbers of occupational therapists, physiotherapists, physical medicine and rehabilitation doctors, speech and language therapists, prosthetists, and orthotists often just one tenth of that required.32

In addition, rehabilitation services are often not integrated within health systems and thus lack the necessary quality and accountability mechanisms. Sometimes such services are provided by non-governmental organisations, where monitoring mechanisms may be insufficient. Other factors that also have a role include access barriers, high out-of-pocket expenses, long waiting times, and a lack of awareness about what rehabilitation entails.33

For children with disability, negative or ill informed attitudes are a major obstacle. Studies have shown that in some countries one of the main barriers to access to care has been discrimination, including from health providers. Evidence of the low priority given to children with disability can be seen in the fallout from the covid-19 pandemic. An ongoing Human Rights Watch survey with respondents from 54 countries found children with disability among the hardest hit, as services for them often fall by the wayside.34

The way forward

Disability urgently needs far higher priority in the child and adolescent health agendas. Low and middle income countries especially need to tackle the huge unmet need for services, which will only escalate with demographic changes. While services need to be built up, a lack of interventions is not the inherent issue. Numerous effective options for children with disability currently exist (see supplementary file 2), but they are not made available in most countries. For example, a recent analysis on hearing aids found that only 17% of the 400 million people “in need” of hearing aids have one.35 To move forward we need a shift of attitudes and the commitment of all relevant parties in the disability and health sectors.

Governments need to scale up service delivery with a strong focus on primary healthcare. This will help widen access and meet rising demand from the growing number of children with disability, many of whom will require services close to home. Primary care can become an essential platform and starting point for the care needed beyond and above the health sector. Some children might otherwise never receive the care they need.

Also, rehabilitation services need to be expanded to reach all children in need. This can happen only through integration into the health system and specifically at the primary care level. Providing early access to rehabilitation services is crucial to ensure optimal outcomes and mitigate the risks of ongoing complications that may affect health and overburden health systems.36

Evidence shows that early intervention at the primary care level can significantly reduce the prevalence of many chronic conditions and delay the onset of conditions, such as for cerebral palsy.373839 Timely prevention interventions that target risk factors can also prevent conditions associated with high levels of disability. Stepping up rehabilitation services will entail sensitising and training the health workforce, who need the necessary information and skills to provide specific services. In addition, families can be given support and education, including on stigma and discrimination, which are at the root of many barriers.

Governments need to look at children with disability with fresh eyes and bring them out of their invisibility to inclusion. Countries need to commit to prioritising children who are among the most disadvantaged in many societies.