Following the approval of the Legal Regime of the Accompanied Adult (Law No. 49/2018), the EQUAL project aimed to identify opportunities and challenges in the implementation of the law, and to understand its effects on the social participation and legal capacity of people with disabilities.
The project was based on an interdisciplinary and innovative approach that brought together Sociology and Law to define and analyze the subject matter, and promoted the active participation of people with disabilities in research activities, in line with the principles of inclusive research and citizen science.
The study included 31 interviews with professionals (judges, experts, technicians, and leaders of institutions supporting people with disabilities) and families of people with disabilities, from various regions of the country. Additionally, four focus groups were conducted with people with intellectual and psychosocial disabilities, as well as six biographical interviews (life stories) with people with intellectual and psychosocial disabilities who benefit from support measures. The study also involved the collection and analysis of 752 court rulings issued under the Accompanied Adult Regime between February 2019 and February 2023, in three judicial districts – Lisbon, Évora, and Viana do Castelo. An innovative aspect of the project was the use of participatory methods that promoted the active involvement of four non-academic researchers – people with intellectual and psychosocial disabilities – in research activities.
The results reveal that the implementation of the Accompanied Adult Regime is a complex process which, while opening new opportunities for the exercise of rights, still faces multiple tensions and difficulties. On one hand, there is consensus that the new legislation is closer to the spirit of the Convention on the Rights of Persons with Disabilities, insofar as it allows the adjustment of support measures to individual needs, contrary to previous regimes of interdiction and incapacitation, which imposed more rigid definitions based on principles of substitution in decision-making (where the person was viewed as a minor and could not marry, vote, among other restrictions). The interviews also highlighted, as a particularly positive aspect of the new law, the requirement for the active involvement of the persons with disabilities themselves in judicial processes, since the legislation now mandates the ‘personal and direct hearing of the beneficiary’ by the Court and establishes that each adult can choose their companion.
“I think the conceptualization, the spirit is much better, much more innovative, much more respectful.”
(B4, Psychiatrist, Expert)
“The advantage this reform had was to allow the person to express themselves and have an opinion, and for their opinion to be valued, regarding the choice of accompaniment and even against the very existence of the accompaniment, leaving behind the previous paternalistic attitude. If the person needs some help, we have to give help. But the person may not want help, and often it is their choice, a different life option. Therefore, (…) the spirit of this new legislation is also to let the person make their own choices and only when necessary, and also depending on the will the person may express, are those decisions taken.”
(C3, Judge)
However, the data collected also point to shortcomings and difficulties in implementing the new Regime, stemming from economic, political, and social factors. Foremost among these are the insufficient resources in the Courts and the pressure of time and volume of cases, which seem to conflict with the requirements of legislation that is ‘necessarily slower’ due to the attention required to determine support measures tailored to each case. Additionally, there persists in the Courts (as in Portuguese society in general) a still overly paternalistic view of disability based on the medical model, which emphasizes incapacities and relies on a ‘care paradigm’ rather than promoting and supporting the right to self-determination.
“We [Public Prosecutors] currently do not have the human resources for so many requests. (…) Because, of course, if I handled all the requests that come to me like I used to handle Interdictions, I would quickly dispose of 100 cases, and keep my caseload controlled. But I cannot handle Accompanied Adult cases like I handled Interdictions, because that is not the philosophy and not the intention.”
(C5, Public Prosecutor)“This new law clashes with the need to do everything faster, faster, and faster. Because this law necessarily is slower. So, what I see is the little compatibility between providing the care that the law requires and at the same time the urgency it demands.”
(B4, Psychiatrist, Expert)“Mentalities take time to change, right? Mentalities don’t change with decrees or laws. I think, for example, and I can speak at the judiciary level, I see colleagues who still look at the new Regime as if it were, well, the same thing as Interdiction, only the name changed.”
(C5, Judge)
The analysis of 752 rulings (including only people aged between 18 and 55 years) in three selected districts reveals the strong predominance, between 2019 and 2022, of the most restrictive accompaniment measure: in 82% of rulings, general representation powers were granted to companions, contradicting the recommendations of the United Nations Committee on the Rights of Persons with Disabilities, which in its General Comment No. 1 reiterates that “legal capacity is a universal attribute inherent to all persons by virtue of their humanity and must be guaranteed for persons with disabilities on an equal basis with others.”
However, it was also possible to verify that in the most recent rulings, issued between February 2022 and February 2023 (N=219), this situation slightly changes: 78% of rulings grant general representation powers to companions, and 21% grant special representation, i.e., a less restrictive accompaniment measure in terms of rights.
Similarly, according to the new law, restriction of personal rights should be exceptional. However, in only 10% of the rulings analyzed was there no restriction of personal rights: 84% of people under accompaniment measures cannot make a will, 72% cannot exercise parental responsibilities (including fostering, exercising parental responsibilities, adoption, and reproductive rights), 60% cannot marry, 53% cannot move or establish residence, 29% are barred from exercising reproductive rights, and 13% (N=98) are barred from voting.
These results suggest the need to continue promoting training for system actors (judicial magistrates and public prosecutors, experts, technicians of institutions supporting people with disabilities) on the new rights paradigm advocated in the Convention on the Rights of Persons with Disabilities, which aims to promote supported decision-making rather than representation (in which the companion decides and the accompanied person is prevented from exercising rights), but also to empower people with intellectual and psychosocial disabilities themselves and their families by preparing and supporting them in exercising their right to self-determination. The need to revise the legislation of the Accompanied Adult Regime was also suggested in order to clarify some concepts, such as the scope and content of accompaniment regimes (Art. 145), thus preventing practices that diverge from the law’s objectives and the Convention.
Funded by the Foundation for Science and Technology, this study was promoted by ODDH/CIEG of ISCSP-University of Lisbon between January 2021 and December 2023. The research, coordinated by ODDH and CIEG/ISCSP-ULisboa, involved a team of academic and non-academic researchers (people with disabilities) and partnerships with the Center for Social Studies of the University of Coimbra, the Superior Council of the Judiciary, the Attorney General’s Office, the Ombudsman, the National Federation of Solidarity Cooperatives (FENACERCI), the National Federation of Rehabilitation Entities for the Mentally Ill (FNERDM), and the Portuguese Federation for Mental Disability (HUMANITAS).