Safe and free: this is how everyone would like to feel when they allow themselves to be enveloped in the comfortable embrace of their own home. Including those who until now have had to limit their autonomy because they live with serious disabilities that make even the home a place where one depends on others. But today technology can transform the home environment and a ‘smart’ home can really support the independence and autonomy of people experiencing severe disabilities, such as those caused by neuromuscular and neurodegenerative diseases. But there is still no awareness of this potential and above all there is little information about it. The ‘We live in new spaces of freedom’ project was born from the need to fill these gaps, presented today in Rome, promoted by Biogen and the NeMO Clinical Centers, in collaboration with NeMO Lab and with the patronage of AISLA (Italian Amyotrophic Lateral Sclerosis Association), Families SMA (Parents’ Association for Spinal Muscular Atrophy Research) and UILDM (Italian Union for the Fight against Muscular Dystrophy). The first smart home prototype is located at the Nemo Lab at the Niguarda hospital in Milan.
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The survey on the level of knowledge
From the qualitative pilot survey, conducted by the multidisciplinary team of NeMO Lab and the NeMO Clinical Center on a sample of 46 adult respondents, of which 23 people with Spinal Muscular Atrophy (SMA), Amyotrophic Lateral Sclerosis (ALS), Muscular Dystrophies and 23 respective caregiver, it emerges that more than half of the interviewees say they are not satisfied with the information received on technologies useful for increasing their autonomy and 7 out of 10 interviewees are unaware that some of these solutions are paid for by the National Health Service, compared to a great faith in environmental control technologies and a desire to use them more.
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The voices of the experts
At the heart of the ‘Let’s live in new spaces of freedom’ project is the publication of the Forward Paper, which brings together the voices of experts from the clinical and academic worlds, together with those from the community of people with neuromuscular diseases, from industry and institutions that have undertaken to act in the competent offices to promote the implementation and simplification of access to technologies and environmental control systems.
Autonomy tool technology
A technology, therefore, allied for the realization of the person’s independent life project, the cornerstone of the recent Framework Law on Disability. “Those who experience a neuromuscular pathology come to terms with physical limits every day and with the need to be supported even in the smallest daily gestures. In this sense, technology represents a fundamental tool at the service of the search for the path to personal autonomy and the desire to live a full life, regardless of the disease”, he says Alberto Fontana, president of the NeMO Clinical Centers, who continues: “The 2006 UN convention for people with disabilities underlines how much it is the environment in which one lives that determines disability. This is why we must continue to work to create the conditions that modify living environments, to build a new image of society, in which the specificities of each become a value for all”. Another fact that emerged from the qualitative survey with the pilot group concerns the lack of awareness of the possibilities offered by technologies and the knowledge of the opportunities provided by the National Health Service.
The complexity of neurodegenerative diseases
One of the added values of technology is its ability to meet the specific needs of everyone, linked to the complexity of neurodegenerative pathologies involving a multiplicity of functional aspects – motor, respiratory, communication and nutrition – and in every phase of life . The challenge is to think of design and technological solutions that support even the smallest gestures and actions and that are capable of simplifying the daily experience lived in one’s own living environment. “If it is true that in recent years scientific research has been making enormous strides in experimenting with pharmacological treatments that are changing the very history of some of these pathologies – he declares Valeria SamsonClinical and Scientific Director of the NeMO Clinical Center in Milan and Full Professor at the University of Milan – it is of fundamental importance to maintain targeted clinical management, which must increasingly include technological management, through which to accompany and educate the person in the choice and use of the devices and systems appropriate to his specific needs”.
A technology usable for everyone
Innovation and technology yes, but they must be accessible to all as expressed by the recommendations signed by the Associations of people with neuromuscular diseases which underline the need to work alongside the institutions, the scientific and technological community to rethink paths that guarantee technology that is practically usable by everyone. Consider, for example, the need to create assistance, information and consultancy services on the territory for accessing and installing technological solutions; the importance of fully implementing the tariff nomenclature, as a reference for some of the necessary devices, ensuring its continuous updating, in parallel with the development of technology; to the need to promote training and information to clinicians, healthcare operators, families, technicians, administrators, each in his specific role.