For more than fifteen years, parents of disabled children in Serbia have persistently and devotedly advocated for the adoption of a Parent-Carer Law, which would provide financial compensation for what is currently unpaid labour, namely, caring for a child with complex health needs. The voices of parents, primarily mothers who bear the greatest responsibility for informal care and support for their disabled children, come directly from their everyday experiences, exhaustion, and ongoing struggle with a system that often fails to recognise the real needs of families.
Recently, the campaign for adopting this legislation has gained momentum, culminating in the parliamentary majority’s refusal to place this issue on the agenda of a parliamentary session. Given that this topic has sparked a lot of interest from the public, and considering its great importance for families raising children with disabilities, friends and colleagues often ask me for my opinion on this proposal. Since the issue is complex and reaches deeply into the core of social policy toward disabled people, as well as their and their families’ human rights, I will attempt through this text to discuss that complexity, so that what is truly at stake can be better understood.
It is entirely understandable that this topic evokes strong emotions — it touches on questions of dignity, financial security, and love for one’s own child. The aim of this text, therefore, is not to challenge or undermine the voices of parents in any way, but rather to offer a reflection on the questions that arise, and thereby encourage public debate so that any potential solutions adopted are of the highest possible quality.
First, it is important to clarify the purpose of different forms of social benefits for disabled people. The additional costs of disability affect both the individual and their family. Direct expenses include assistive technologies, medical and technical aids, medication and therapies, personal assistance, accessible transport, home adaptations, increased energy costs (for example, for medical devices or heating), as well as treatments that help, if not to improve a condition, then at least to maintain it. Even when the state covers some of these costs through social policy programmes, it usually does so only partially, leaving a significant portion to be borne by families. These costs naturally vary depending on the type and severity of impairment, as well as on the accessibility of the environment and the barriers a person faces.
In many countries, robust studies are conducted to quantify the additional financial burden faced by households with disabled members. In the United Kingdom, it has been estimated that households with a disabled member need to spend around £975 more per month to achieve the same standard of living as other households, which amounts to an average of 63% of household income after deducting housing.
Indirect costs arise from lost earning opportunities for a disabled person due to a lack of social support, inaccessibility, and discrimination in the labour market. These indirect costs also affect the entire family, particularly parents (most often mothers), who are frequently forced to leave their careers in order to care for a disabled child. As a result, disability is experienced in practice by the entire family: parents exit the labour market, pause their careers, and lose pension contributions, pushing families into a vicious cycle of poverty. The recent cost-of-living crisis has further deepened this problem, both in Serbia and internationally.
The state has a duty to provide support and protection from poverty to all citizens, and especially to disabled people. Under Article 28 of the UN Convention on the Rights of Persons with Disabilities, states are obliged to recognise the right of persons with disabilities to an adequate standard of living and social protection, including access to support programmes to cover living costs. This means that the state must not leave families to fend for themselves, but must ensure economic security and conditions for equal participation in society through systemic programmes.
The Convention does not prescribe concrete models for how such programmes should look; states have considerable freedom to design their social protection systems, types of benefits, eligibility criteria, and assessment mechanisms. However, it does establish key principles that should guide states — among them, maximum respect for the choices of disabled people and their control over their own lives. This principle is not merely a collection of nice phrases, but a lens through which systemic solutions must be evaluated.
In practice, states adopt different types of disability-related benefits, each with a distinct purpose:
- Compensation benefits for additional disability-related costs, regardless of employment status or ability to work (e.g. the UK’s Personal Independence Payment or Croatia’s Inclusive Allowance);
- Income-replacement benefits for people who cannot work due to disability (e.g. disability pensions in Serbia, Germany’s Erwerbsminderungsrente, or Canada’s CPP Disability Benefit), which require prior contributions and a determination of incapacity for work;
- Benefits compensating for the severity of impairment, addressing reduced functioning due to impairment or illness (e.g. Serbia’s Allowance for Care and Assistance by Another Person);
- Benefits and services aimed at removing barriers and supporting inclusion, enabling access to education, employment, and community living (e.g. the UK’s Access to Work programme or direct payments used for personal assistance in countries such as the UK, Belgium, and the Netherlands).
These differences are not merely technical; they reflect value-based and ideological choices: whether disability is viewed through a medical lens as an individual deficit to be compensated, or as a consequence of social barriers that must be removed.
In Serbia, the primary form of financial support for disabled people is the Allowance for Care and Assistance by Another Person. Eligibility is based on criteria combining the degree of bodily impairment and functional inability to independently perform basic life activities such as dressing, eating, mobility, and personal hygiene. This system derives from an outdated medical assessment model relying on so-called impairment percentage tables. The essence of this approach is that disability is measured through the level of impairment of the body or mind, rather than through barriers encountered in everyday life.
Modern systems, however, operate on a different concept. Instead of measuring how impaired a person is, they assess in which areas of life and in what ways society can remove obstacles and enable equal participation. For example, the UK’s Personal Independence Payment (PIP) assesses how a health condition affects functioning across various domains of daily life, such as food preparation, personal care, communication, managing money, mobility, orientation, and social participation. Each activity is assessed in terms of safety, acceptable standard, and reasonable time, making the assessment grounded in reality rather than abstract.
The modernisation of Serbia’s disability benefit system and its assessment process has been highlighted as a key recommendation of the UN Committee on the Rights of Persons with Disabilities. Such reform would shift the focus from bodily impairment to real-life needs and barriers, opening the way for an empowering rather than stigmatising system.
Turning now to the proposal for a Parent-Carer allowance, legislative proposals recognising parents as carers have circulated for some time in various forms, with a common thread. In most proposals, eligibility depends on the child already receiving the Allowance for Care and Assistance by Another Person — meaning the state has already determined a “severe degree of impairment” and a need for ongoing care. When the child becomes an adult, the parent would need to prove that the person is incapable of independent living in order to retain the allowance, which in practice often requires initiating proceedings to deprive a person of legal capacity.
This would strip a disabled adult of basic decision-making rights, directly contradicting Article 12 of the UNCRPD, which guarantees equal right to legal capacity and supported decision-making, not its removal.
This approach is rooted in a medicalised view of disability, assuming dependency and incapacity solely on the basis of the existence of impairment. Instead of focusing on removing barriers and enabling autonomy, it institutionalises long-term dependency between parent and child. Both become trapped by social policy: the parent is financially forced to remain a “carer,” while the disabled person is forced to remain “cared for.” Such a benefit structure neither empowers families nor emancipates disabled people — it prolongs isolation.
The proposal also raises unresolved questions, such as:
- Does the person have any choice or control over the care they receive?
- What happens if a parent-carer provides care that does not align with the person’s needs or preferences?
- What if the person wishes to leave the household and live independently with support?
- Is there support for the parent if the caring relationship ends and they return to the labour market?
- Can someone deemed “dependent” still access independent living services such as personal assistance?
Introducing a Parent-Carer Allowance also creates an overlap with existing benefits. If the current Allowance for Care and Assistance by Another Person already compensates the need for care, its purpose overlaps with the proposed Parent-Carer Allowance. For this reason, and for those outlined above, reforming the existing Allowance for Care should be the priority, following examples such as Croatia’s transformation of this benefit into an Inclusive Allowance focused on removing barriers and compensating increased living costs.
Care itself is a universal human experience, not inherent in one specific family relationship. All people both give and receive care throughout their lives — as children, parents, partners, friends. Therefore, care should not be legally or symbolically tied exclusively to the parent–disabled child relationship. Such framing reinforces the idea that disability requires parental care rather than social solidarity and systemic support.
In many countries, including the UK, Carer’s Allowance is available to anyone who provides at least 35 hours of care per week, regardless of family relationship. This flexibility promotes fairness, inclusion, and relieves parents from the implicit expectation of lifelong caregiving.
It is essential that we ask difficult questions, consider all consequences and scenarios, and do not accept the Parent-Carer model as the only or best solution. Financial support for individuals and families is necessary, but it must be carefully designed in line with human rights principles. Other options exist, options that may better reconcile family support with the right of disabled people to independent living and full participation in society.
