In recent times, particularly in the past few years, I have often come across appeals from disabled people, their parents, and disability organisations calling for the establishment of a Registry of Disabled People. For example, when appearing in various media programs, parents of children with autism often criticise the Government’s indolence and lack of up-to-date data, reflected in the fact that the Government does not maintain a so-called Registry of Persons with Autism. Such a registry, they believe, would make it possible to determine with certainty how many people in Serbia have autism – or some other diagnosis relevant for statistical monitoring.
In short, their hope is that insight into the number of people with a particular type of impairment would help decision-makers in planning public policies and allocating budget funds for different support services intended for this population. However, is that really the case? And does “counting” disabled people actually have the potential to establish a just social policy and contribute to the realisation of disability rights?
There are at least three reasons why a Registry of Disabled People cannot meet these expectations – and may even cause more problems than it solves. It is true that responsible states base their public policies on evidence and data. But here we already encounter the first challenge: what kind of data on disabled people is needed to design an adequate social policy?
What the advocates of the Registry of Disabled People, or of impairment-specific registries covering a certain diagnosis (e.g., a Registry of Persons with Autism), keep repeating is that it is necessary to know the exact or at least approximately accurate number of people with a given diagnosis. From this, it can be inferred that the registry would most likely rely on health records and data from the healthcare system that records diagnoses and clinical information about patients. However, the assumption that data on diagnoses will help make decisions about the necessary redistribution of resources for support services is fundamentally flawed for several reasons.
First, a diagnosis is not a reliable indicator of a person’s actual needs. Many diagnoses cover a wide spectrum of clinical manifestations, ranging from mild to severe. For example, we know that autism encompasses a broad spectrum of this condition; similarly, cerebral palsy can involve anything from minor movement difficulties to combined challenges in communication, cognitive functioning, and/or more severe mobility impairments requiring mobility aids. Moreover, many diagnoses are not static; they can be progressive or lead to other comorbidities – meaning that health and other needs change over the life course.
Second, the most important reason why diagnosis data are not crucial for social policy is that a medical diagnosis is not synonymous with disability. The problem of defining disability is methodological in nature. The UN Convention on the Rights of Persons with Disabilities (CRPD) defines persons with disabilities as all those with long-term physical, sensory, mental, or intellectual impairments which, in interaction with various barriers in the environment, may hinder their full and effective participation in society.
I have written elsewhere about the conceptual difference between terms that refer to people’s biological or personal characteristics and the disabling conditions that stem from environmental barriers. Here, it is enough to say that disability cannot be reduced to a medical diagnosis; it is fully understood only when the environment in which a person lives and functions is taken into account. Knowing someone’s diagnosis provides no information about that environment. Simply put, questions such as “How many schools are fully accessible and adapted?”, “How many public transport vehicles are accessible?”, or “How many intersections in a city have audible traffic signals?” are perhaps even more important than the question “How many people have diagnosis X or Y?”
Third, the methodological challenge of defining disability inevitably leads to the risk that certain medical diagnoses may be excluded – that is, not considered “disabilities” eligible for inclusion in the registry. For instance, the Convention takes a broad view of disability and includes persons with chronic illnesses or mental health conditions, as long as these are long-term or chronic in nature and result in barriers such as stigma, lack of workplace support, legal obstacles, and other forms of social exclusion beyond the obvious physical barriers. If the registry were to adopt a narrow definition of “disability,” this would have serious consequences for all groups that would then not be officially recognised as disabled.
In other words, a diagnosis (marked with a code from the International Classification of Diseases) is not a reliable indicator of a person’s functioning or needs. Two people with the same diagnosis may have entirely different support requirements – one might need more hours of personal assistance if they live in an inaccessible place, while another might need little or no assistance if they have a milder impairment or live in an accessible environment. One person may require supported housing services, while another may not; one may need assistive devices, technology, or home adaptations, while another does not.
It is worth recalling that the Republic of Serbia is a signatory to the UN Convention on the Rights of Persons with Disabilities, which sets out in detail the obligations of state parties in this field. Among other things, Article 31 of the Convention emphasises the importance of collecting statistical data on persons with disabilities for the purpose of identifying barriers they face in society.
The UN Committee on the Rights of Persons with Disabilities, which monitors implementation of the Convention, issued clear and specific recommendations to Serbia in 2016. In relation to data collection, it is enough to note that the Committee did not mention establishing a Registry of Disabled People. Instead, it recommended collecting data on the number and quality of social services and their users, on residential institutions and their residents, and on the number of complaints of discrimination on the basis of disability.
To improve data quality, the World Health Organisation (WHO) and the World Bank developed the Model Disability Survey (MDS) – a standardised instrument that measures functioning, barriers, and participation in society, rather than just diagnoses. This survey should be conducted periodically and would produce much more useful data than a registry of disabled people could.
Finally, let us return to the expectations of those advocating for the much-discussed Registry—namely, that it would enable data-driven social policy and allow the state to know how much funding to allocate for specific social services or other programs for persons with disabilities. But such planning is already possible without a registry. It is enough to use existing administrative data on the average annual number of applicants for a given right or service – this can serve as a solid basis for budget planning. Combined with periodic specialised surveys such as the MDS, statistical monitoring would be of higher quality than anything the proposed Registry could offer.
Instead of spending energy and time on undertakings that are not required by the Convention, it is time for all stakeholders – especially parents and disabled people themselves – to familiarise themselves with the Convention’s provisions and refocus efforts on what truly serves its implementation.
