ORToday technology can change the lives of people living with severe disabilities. For instance, transforming their home environment, equipping it with effective tools to make those with reduced mobility independent. Few know this, even among people suffering from neuromuscular diseases, but one smart home for the physically disabled is possible. Already today. The first prototype is located at the Nemo Lab at the Niguarda hospital in Milan. But the challenge is to make the latest technologies accessible to all.
A smart home for the disabled (more) autonomous
A certain ignorance of what is already possible today clearly emerges from the qualitative survey conducted by the multidisciplinary team of NeMO Lab and the NeMO Clinical Centre. The survey was carried out on a sample of 46 adult respondents, including 23 people with spinal muscular atrophy (SMA), amyotrophic lateral sclerosis (ALS), muscular dystrophies and 23 their respective caregivers.
For as many as 74% of people with neuromuscular diseases, the meaning of autonomy is closely linked to the presence of a caregiver. For many, even being able to turn the light on and off yourself would be a huge step forward. And therefore i environmental control systems they would make a difference. But 7 out of 10 respondents they do not know that some of the technological solutions available today are paid for by the National Health Service. Or yes knowledge of aids to overcome electro barriersniche and devices of home automation low housewife cost on the market. But you have not informtions on the potential that these aids could havere, employed in a coordinated manner and in response to needs specific to the person with a disability.
We inhabit new spaces of freedom, the NeMO Centers project
The implementation and simplification of access to environmental control technologies and systems is the basis of the project “We inhabit new spaces of freedom”presented yesterday in Rome, promoted by Biogen and dai NeMO Clinical Centers. In collaboration NeMO Lab and with the patronage of AISLA (Italian Amyotrophic Lateral Sclerosis Association), SMA Families (Parents Association for Spinal Muscular Atrophy Research) And UILDM (Italian Union for the Fight against Muscular Dystrophy). At the heart of the project is the publication of Forward paperwhich brings together the voices of experts from the clinical and academic world, together with those from the community of people with neuromuscular diseases, institutions and industry.
The value of an independent life in the UN Convention
Technology as an ally for the realization of a person’s independent life project is the cornerstone of recent developments Framework Law on Disability. Not only. “There UN convention for people with disabilities of 2006 underlines just how much it is the environment in which one lives determines the disability». She remembered it Alberto Fontana, president of the NeMO Clinical Centers. “Hence the importance of working 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”.
What is the smart home for the physically disabled
Neurodegenerative pathologies involve a multiplicity of functional aspects: motor, respiratory, communication and nutrition. Aspects that change in the stages of life. The challenge is to think of solutions that support even the smallest gestures and that are capable of simplifying daily life in your environment. This is explained by Valeria Sansone, clinical and scientific director of the NeMO clinical center in Milan and full professor at the University of Milan. «Scientific research is making enormous strides in experimenting with pharmacological treatments. But it is of fundamental importance to maintain a targeted clinical management. Which is also a technological take-overthrough which to educate the person in the choice and use of devices appropriate to his specific needs”.
Home automation and voice assistants, so they change lives
Of home automation and voice assistants you can see above all the playful aspect. While they are fundamental tools in promoting the autonomy of people with difficulties. A smart home is built fromtheir expectations, needs and desires of the daily: here, really, technology and systems of withenvironmental control can become extension of human faculties and amplify residual skills. But ua smart home can reduce too caregiver burden and be an advantage for the doctorwho can better monitor his patient.
Solutions within everyone’s reach
And along this path, the recommendations signed by the Associations of people with neuromuscular diseases clearly express the need to work alongside the institutions and the scientific and technological community. The goal is to guarantee a technology that can be practically used by all. For example, by creating assistance, information and consultancy services on the territory for accessing and installing technological solutions. But also by fully implementing the Tariff nomenclatorthe document of the Ministry of Health which defines prostheses and aids to be paid by the National Health Service.
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