People with autism and intellectual disabilities, much like individuals with typical development, share a fundamental right and aspiration to realise their own life projects. However, this natural pursuit is uniquely challenging for individuals with autism and intellectual disabilities due to their communication and adaptive hurdles. This growing need has prompted the development of a specific procedure for crafting life projects geared toward enhancing their quality of life. In the present work, we will describe the six key steps and the corresponding assessment, support, and verification tools essential for establishing and actualising the life project for individuals with disabilities, as conceptualised by the Italian Society of Neurodevelopmental Disorders (SIDIN). We will start by delineating diverse preference and value assessment procedures, showcasing an array of tools tailored to accommodate the distinct characteristics of adaptive and communicative functioning in individuals with disabilities. Following this, we will provide a succinct overview of support needs assessment tools. Subsequently, we will introduce the Ecological Life Balance, which serves as an integrative tool for harmonising various assessment systems. We will propose methods for defining existential goals that prioritise quality of life and suggest strategies for implementing support plans. Lastly, we will delve into the methodologies for monitoring and verifying outcomes in the final section.

This research aims to examine access to medical treatment during the COVID-19 pandemic for people living with disabilities. During the COVID-19 pandemic, the practical and ethical problems of allocating limited medical resources such as intensive care unit beds and ventilators became critical. Although different countries have proposed different guidelines to manage this emergency, these proposed criteria do not sufficiently consider people living with disabilities. People living with disabilities are therefore at a higher risk of exclusion from medical treatments as physicians tend to assume they have poor quality of life, whereas access to medical treatment should be based on several parameters, including clinical data and prognosis. However, the COVID-19 pandemic shifts the medical paradigm from person-centred medicine to community-centred medicine, challenging the main ethical theories. We reviewed the main guidelines and recommendations for resources allocation and examined their position toward persons with disabilities. Based on our findings, we propose criteria for not discriminating against people with disabilities in allocating resources. The shift from person-centred to community-centred medicine offers opportunities but also risks sacrificing the most vulnerable people. The principle of reasonable accommodation must always be considered to guarantee the rights of persons with disabilities.

For some years, the term "project of life" has become widely used in the field of neurodevelopmental disorders, and, at the same time, it has begun to make its way in many social and health planning documents. However, beyond its relatively widespread use, this term does not yet possess an adequate and shared frame of the main underlying decision-making processes. In particular, there is a need to identify the crucial questions for orienting the choice of goals within the adolescent transition, which represents the complex hinge between childhood and adulthood. Moreover, adulthood, which is often completely devoid of culturally and socially shared references, is still critical precisely because of the lack of future direction prompts usually represented by the stages of development. In this case, the themes of quality of life functioning as a guiding compass appear pertinent and much more relevant. The present contribution is, therefore, an attempt to present, in a unitary manner, the decision-making processes and questions at the basis of a construct of "project of life" shared within the scientific and associative communities.

Supporting individuals with NDD is extremely demanding, with significant exposure to critical contexts and events, and painful ongoing experiences. Stress and burnout condition is a main concern with growing interest in research, despite the lack of consensus on theoretical explanatory models and modification standards.The paper provides an up-to-date review of risk factors and involved processes, and presents evidence-based procedures and protocols to implement effective preventive actions addressing both organizational and individual factors. The aim is to offer a global understanding of the subject and offer examples of practical plans to increase the impact on the quality of life of clients and staff members.

The principle of self-determination highlights the empowerment of people with neurodevelopmental disorders in most aspects of their life. It makes it possible for this population to express their values and wishes to have a better quality of life. Unfortunately, when it is necessary to talk about illness and healthcare, it becomes very difficult to meet the challenge of both issues and bad news, as well as clarify therapeutic opportunities and palliative care. Improving the awareness of people affected by neurodevelopmental disorders, their capacity of expression, comprehension and communication with professionals can provide them with the possibility of a choice as far as their health is concerned, in a quality-of-life perspective.

Objectives: Ciliary neurotrophic factor (CNTF) is a neurotrophin which could signal neuronal suffering and at the same time acts as a neuroprotective agent. In the present study we aimed to evaluate CNTF serum levels in autism spectrum disorders (ASDs). In fact, considering the role of CNTF as a neuronal damage signal and the role of neuroinflammation, excito-inhibitory imbalance and excitotoxicity in the pathogenesis of ASDs, a possible alteration of CNTF in ASDs could be hypothesised. Methods: We recruited 23 individuals with ASDs and intellectual disability (ID), 20 ID subjects and 26 typical adults. A complete medical and psychopathological characterisation of the participants was performed. CNTF serum levels were measured with ELISA. Results: CNTF serum levels were significantly higher in the ASD + ID group compared to ID (p < .001) or typically developed subjects (p < .001). Conclusions: CNTF may be considered as a potential biomarker candidate for ASDs in the context of severe ID. Our results support the hypothesis of neurotrophic imbalance in ASDs.

Contrary to public policy and research expectations, restrictive behavior practices continue to be used with individuals with intellectual disabilities. This paper reports the effects of a multi-component service package for a residential service for over 400 adults with intellectual disabilities and challenging behavior. Over an 11-year period, there was a large and near elimination of mechanical restraints and pro re nata medications and a decrease in staff working days missed because of resident aggression, despite an increase in the complexity of resident needs. This study demonstrates that large-scale, long-term reduction of restrictive behavior management practices is possible using a multi-component organizational reform package.

Purpose – The purpose of this paper is to present a review on evidence-based intervention concerning the reduction of stress/burnout and the improvement of wellbeing for professionals working with people with intellectual disabilities (IDs). Design/methodology/approach – Theoretical models and literature related to stress reduction are reviewed from a classical cognitive behaviour therapy (CBT) approach up to the novel contribution of the third generation of cognitive-behavioural therapies, with a specific focus on contextual behavioural sciences and acceptance and commitment Therapy (ACT). Findings – Despite the improvement of CBT-based interventions in reducing risk factors for stress and burnout, the limitations of a problem-solving approach when applied to challenging environments like those of direct support to persons with ID, are still large. Interventions based on the core processes and the related techniques of ACT appear to be promising in promoting the well being of paid carers reducing the risk of burnout, and increasing psychological flexibility. Such factors can increase the ability to clarify personal and professional values, as well as the opportunities to act consistently with such values and achieve greater social reinforcement in the work environment. Research limitations/implications – The limitations of the existing research are presented and discussed. There are several aspects that future research should address in order to promote staff training protocols that could be extensively applied with preventive aims. Organisations could take the available procedures and methodologies and implement these evidence-based practices within existing training. Originality/value – The research on the application of ACT and third generation of behavioural approaches to the wellbeing and behaviour of staff supporting persons with IDs remains limited. The present paper is the first narrative review on this topic.

Purpose – The purpose of this paper is mainly to present a general review of third generation cognitive-behavioural therapies (CBTs), and to debate whether these approaches are applicable to persons with neurodevelopmental disorders (NDD). Design/methodology/approach – Despite the lack of consistent literature focused on this population, the authors have considered the available general literature on the third generation of CBTs and analysed core issues of the processes within the context of intellectual disabilities and Autism spectrum disorder. Findings – The evidence from typical developing population studies and the emerging literature specific to people with NDD is convincing, but there is a need for studies exploring how and when these therapeutic approaches can be applicable. Two behavioural approaches of third generation therapies – acceptance and commitment therapy and mindfulness-based CBT – appear to have the most potential to be adapted for robust intervention for the broad spectrum of persons with NDD. Research limitations/implications – The number of studies and methodologies applied are a clear limitation and the present paper is only exploratory. Originality/value – The paper supports clinicians to use the emerging protocols, and to replicate and implement procedures and techniques.

Background In Italy, just like in many other countries, there are no long-term care facilities specified for people suffering of Huntington’s disease, especially when their needs are represented by severe challenging behaviours which make them impossible to live at home Aims To answer to needs of people with HD and severe, long lasting, challenging behaviours, we develop and implement a protocol of care QoL oriented to sustain them and their peers in their daily life. Promoting this protocol align the care’s management of these people special needs in a residential setting with other very different disabled people. Methods/techniques Our service consists of a net of 21 residential facilities (different for prevalent support needs: challenging behaviours, high functioning, health needs) with 408 adult subjects with IDD and Autism aged between 18 and 90. Only 6 of them are affected from HD and they don’t live in a dedicated setting because their needs are very different. To satisfy the different needs of our population we adopted a QoL model of care (R. Shalock), OMS paradigm of human functioning and we select evidenced based instruments and interventions in a multidisciplinary approach: both a clinical level and a management level. Outcome The defining specific protocol of care for people with HD supports the clinical decision making process of intervention across lifespan. Conclusions Developing a good practice of care, QoL oriented, to manage special needs of persons with HD in residential setting, promote interventions person-centred and support patient, family and cares until end of life stages of the disease.