Cirulli, Francesca

Venerosi, Aldina

English

Annali dell'Istituto Superiore di Sanità

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Ann Ist Super Sanità 2020 | Vol. 56, No. 2: 133-134
DOI: 10.4415/ANN_20_02_01
Editorial
A focus on the rights  
to self-determination and quality of life  
in people with mental disabilities
Francesca Cirulli and Aldina Venerosi
Centro di Riferimento per le Scienze Comportamentali, Istituto Superiore di Sanità, Rome, Italy
At world level, health systems have not been able to 
respond effectively to the burden of mental disorders 
and there is an important gap to be filled between the 
need for treatment and its delivery [1]. The pandem-
ic we are currently facing has additionally put mental 
health on the spot as a sector much neglected so far 
and most in need for innovative and multi-strategy ap-
proaches [2].
Mental health and mental disorders include not only 
individual traits, such as the ability to manage one’s 
thoughts, emotions, behaviors and interactions with 
others, but also social, cultural, economic, political 
and environmental factors determined by national poli-
cies, such as social protection, living standards, work-
ing conditions, and community social supports, among 
others. Community-based mental health and social 
support services need to innovate themselves in order 
to encompass a recovery-based approach emphasiz-
ing the promotion of human rights and quality of life. 
Employment, housing, educational opportunities and 
participation in community activities ultimately sup-
port individuals with mental disorders and psychosocial 
disabilities to achieve their own aspirations and goals 
[1, 3]. 
The ground-breaking work initiated by the charis-
matic psychiatrist Franco Basaglia led to a cultural shift 
in Italy, culminating in the Law 180/1978, which im-
posed the closure of mental hospitals, restoring dignity 
to people with mental health problems, and promoting 
the role of therapeutic communities. Since then, there 
has been an increasing coverage of evidence-based 
interventions indicating that, in order to implement 
community-based mental health, we need to build a 
recovery model based upon the establishment of inter-
disciplinary mental health teams supporting individual 
self-determination. The delivery of “integrated and re-
sponsive care” meeting both mental and physical needs, 
promoting the right to employment, housing and ed-
ucation plays a fundamental role for the inclusion of 
people with psychosocial disabilities in their services 
and programs. In the current issue of the journal, the 
monograph “Life planning for people with neurodevel-
opmental and intellectual disability: effective support, 
quality of life, and community engagement” highlights 
the most advanced examples of good practices towards 
this aim [4]. As suggested, the availability of person-
centered actions, even providing a health budget direct-
ly managed by individuals and their families, appears 
as a promising strategy for addressing person’s rights 
to self-determination [5]. The health budget is defined 
by the Italian National Observatory on the condition 
of people with disabilities as a “quantitative and quali-
tative tool for defining the economic, professional and 
human resources necessary to trigger a process aimed 
at restoring centrality to the person, through an indi-
vidual global project”. Certain individuals and groups 
in society may be placed at a significantly higher risk 
of experiencing mental health problems. Thus, stand-
ing for the rights of people with serious intellectual and 
neurodevelopment disabilities [6] requires a major ef-
fort in terms of tailoring the socio-health services to 
individual needs with a life-span vision to support the 
main life transitions. This can be achieved, for example, 
using constructs such as “Quality of Life” (QoL) that 
since 2002, the International Association for the Sci-
entific Study of Intellectual and Developmental Dis-
abilities (IASSIDD) proposed as reference frame of all 
therapeutic and rehabilitative interventions providing 
assessment and analysis tools, useful for guiding the 
modulation of individual supports and to suggest guide-
lines for innovation at the macro-system level. The QoL 
framework should play a prominent role in education 
and training of mental health professionals [7]. 
The health budget methodology places the emphasis 
on co-planning, co-management and co-financing, as 
well as on the evaluation of the processes and projects 
to be set up and implemented also through public-pri-
vate partnerships [5, 8]. In order to achieve this goal, 
individual plans must be set up by multidisciplinary 
teams and shared with the person and his/her family, 
while appropriate administrative tools have to be devel-
oped for the direct management of financial and welfare 
Address for correspondence: Aldina Venerosi, Centro di Riferimento per le Scienze Comportamentali e la Salute Mentale, Istituto Superiore di Sanità, 
Viale Regina Elena 299, 00161 Rome, Italy. E-mail: aldina.venerosi@iss.it.
Francesca Cirulli and Aldina Venerosi
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resources. The principles of “integrated and responsive 
care” and the potential for public-private partnership in 
mental health have been perfectly exemplified by Social 
Farming (SF) experiences promoted in many regions of 
Italy and which represent a phenomenon widespread 
throughout Europe. Rural areas are a perfect place to 
promote health and build social interventions in men-
tal health. It should be remembered that the European 
Commission has recently underlined the key role of ru-
ral areas – which represent a large part of the European 
territory and of the population of the Member States – 
in facing the current and future challenges of society in 
terms of the supply of public goods, sustainability and 
improvement of social well-being for the inhabitants of 
rural and urban areas. Access to the natural environ-
ment and outdoor spaces has begun to be considered 
vitally important for mental health, reducing the effects 
on stress, lowering anxiety and promoting physical ac-
tivity, with cascading effects on immune functioning 
and general physical health. Natural environments – 
including urban green spaces – also provide opportu-
nity for social engagement and are indeed increasingly 
recognized for their role in contrasting isolation and 
loneliness and promoting social integration. By provid-
ing de-institutionalized care, SF is increasingly recog-
nized as an innovative way to respond to the cultural 
shift from institutional psychiatry to community-based 
mental health care, in line with the recommendations 
of the WHO’s Mental Health Action Plan. SF has the 
potential to foster the farming sector and to generate 
informal care being able to promote and generate social 
services to local communities. In 2015, the first Italian 
National law on SF was approved by the Italian Parlia-
ment [9], providing a framework to support coopera-
tion among health services, farmers, social cooperatives 
and voluntary associations. The current challenge is to 
use this legislative framework to exploit SF as a means 
to envision and develop future strategies for the evolu-
tion of the National Health Service in terms of its ca-
pability for health delivery and social inclusion and to 
conjugate this with economic sustainability. 
In conclusion, one step further needs to be taken, 
steered towards the re-orientation of services and the 
strengthening of local community actions to offer a 
wide spectrum of welfare solutions depending on the 
local context, individual desire and skills [8]. This chal-
lenge requires a significant innovative impulse in the 
area of social and health care as well as in civil society 
itself. As a first step, we need to reorient and facilitate 
administrative procedures, for example, to promote 
a health budget approach, avoiding the prevailing of 
bureaucracy over the needs of personal care. Overall, 
greater emphasis should be placed on satisfying indi-
vidual needs, such as housing, friends, social networks, 
education, and employment alongside clinical care and 
treatment. Furthermore, social innovation models ori-
ented towards a more participative welfare should pro-
mote human and social capital, avoiding “dependence 
traps” and social isolation.
In Italy, a specific legislation has been produced on 
this topic, which is based upon the principles of per-
son-centered care, community welfare, and the promo-
tion of a greater control from the end users [10]. A 
similar welfare system and a convergent definition of 
the strategic ‘pillars’ of the regional welfare scheme are 
shared across Italian regions. Access, assessment, plan-
ning, and monitoring are the main steps of the path 
governing individual care and they may represent the 
means to align the social and health programs, as well 
as resources within the local environment, which is 
where the implementation of the individual path takes 
place. However, implementation of current local and 
national legislation is lagging behind. Thus, national 
policies capable to harmonise, boost and monitor per-
son-centered approaches in the mental health field are 
urgently needed.
REFERENCES
1. World Health Organization. Mental Health Action Plan 
2013-2020. WHO; 2013. Available from: www.who.int/
mental_health/publications/action_plan/en/.
2. Holmes EA, O’Connor RC, Perry VH, Tracey I, Wes-
sely S, Arseneault L, et al. Multidisciplinary research 
priorities for the COVID-19 pandemic: a call for action 
for mental health science Lancet Psychiatry; 2020. doi: 
10.1016/ S2215-0366(20)30168-1
3. World Health Organization. Mental health: a state of 
well-being. WHO; 2016. Available from: www.who.int/
features/factfiles/mental_health/en/. 
4. Venerosi A, Cirulli F (Eds). Life planning for people with 
neurodevelopmental and intellectual disability: effective 
support, quality of life, and community engagement. Ann 
Ist Sup Sanità. 2020;56(2):158-250.
5. Adinolfi P, Starace F, Palumbo R. Health outcomes and 
patient empowerment. The case of health budgets in Ita-
ly. J Health Manag. 2016;18(1):117-33.
6. United Nations. Convention for the Rights of Persons 
with Disabilities (CRPD). UN; 2006.
7. Schalock RL, Brown I, Brown R, Cummins RA, Felce D, 
Matikka L. et al. Conceptualization, measurement, and 
application of quality of life for persons with intellectual 
disabilities. Report of an international panel of experts. 
Ment Retard. 2002;40(6):457-70.
8. Prandini R, Orlandini M. Personalizzazione vs individu-
azione dei servizi di welfare: fasi, attori e governance di 
una semantica emergente. Studi di Sociologia. 2015:353-
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9. Italia. Italian National law on SF was approved by the 
Italian parliament. Law n. 141, 8 August 2015. Gazzetta 
Ufficiale n. 208, 8 settembre 2015.
10. Italia. Ministero della Salute. Piano di Azioni Nazionale 
per la Salute Mentale (PANSM). Available from: www.
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A focus on the rights to self-determination and quality of life in people with mental disabilities. Editorial

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A focus on the rights to self-determination and quality of life in people with mental disabilities. Editorial

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