Interview with Vincenzo Soverino, Commander of the Order of Merit of the Italian Republic, national board member and Asti representative of AISLA (Italian Amyotrophic Lateral Sclerosis Association).
1 Welcome and inclusion
How would you describe the situation today regarding the welcome and inclusion of people with disabilities in Italy and Europe?
The situation in Italy and Europe is marked by a deep divide between progress in laws and policy and the daily reality of social, economic and structural barriers.
While institutions promote ambitious strategies for a transition to full inclusion, actual accessibility and service quality are heavily affected by regional fragmentation and structural shortcomings.
The provision of essential services varies greatly, especially in Italy, where access to support and inclusion depends on the region in which a person lives.
At European level, the European Strategy for the Rights of Persons with Disabilities 2021–2030 and the AccessibleEU network aim to establish common accessibility standards for transport, sport, culture and buildings.
Another concrete step is the European Disability Card, designed to support mobility and mutual recognition of benefits among EU member states.
Yet implementation and the quality of local services still depend heavily on the resources and political will of national governments. Problems persist in Italy, too: many organizations do not recognize the Disability Card, and many people with disabilities are unaware that it exists.
2 Disability and the Sustainable Development Goals
What progress have we made on disability and inclusion under the Sustainable Development Goals? Are they genuinely useful tools for identifying problems and guiding policy?
The connection between disability and sustainable development is enshrined in the United Nations 2030 Agenda, whose central principle is “Leave no one behind.”
The Italian Alliance for Sustainable Development (ASviS) has highlighted the impoverishment of families, showing how a failure to include people with disabilities directly undermines progress towards the Sustainable Development Goals.
The relationship between disability and the main sustainability goals has three critical dimensions.
Fighting poverty and inequality
The social and economic costs associated with disability fall disproportionately on family budgets. When inadequate public services force families to turn to private providers, a vicious cycle begins.
Under the goal of ending poverty, the cost of private care reduces disposable income and pushes entire families below the poverty line.
As for reducing inequalities, disability compounds existing disparities. People without the financial resources to pay for private assistance face discrimination on two fronts, and their right to a dignified life is put at risk.
Decent work and economic growth
Economic sustainability depends on inclusion in employment.
Providing decent, accessible jobs for people with disabilities reduces their economic dependence on benefits and family support.
Support for caregivers is equally important. Family members, especially women, often have to leave their jobs or cut their hours to become full-time caregivers. This harms both overall productivity and gender equality.
Quality education and sustainable cities
Public services and infrastructure are the foundations of independence.
Schools without physical barriers, and with sufficient specialist support teachers, are essential to preparing active citizens and preventing educational disadvantage.
Likewise, a city is truly sustainable only if it is universally accessible. That includes inclusive public transport, public spaces free of physical barriers and digital services that everyone can use.
In short, disability is not an isolated issue but a measure of how sustainable a society really is across the board. Without universal, effective, high-quality public services, the goals of the 2030 Agenda cannot be fully achieved.
3 The needs of individuals and their support networks
What are the main needs today of people with disabilities and, in parallel, of their families and caregivers?
The needs of people with disabilities cannot be considered separately from those of their families. Disability is a relational and social experience that deeply affects the whole family.
To ensure a good quality of life over the long term, responses must move from a purely care-based approach to a comprehensive, personalized one that recognizes the many dimensions of the person.
The needs of people with disabilities
At their heart are the fundamental rights to self-determination, to develop one’s potential and to participate actively in society.
Independence and an individual life plan. The primary need is to move from a model of “care and protection” to one of empowerment and inclusion. This requires an individual life plan that puts the person at the centre of decisions about their future.
Accessibility and mobility for all. Urban spaces, public transport and buildings must be usable. This also includes making websites, software and interfaces accessible so that people can obtain information and services independently.
Education and lifelong learning. People need access to genuinely inclusive schools and universities, supported by trained professionals such as specialist support teachers and communication assistants, and by appropriate assistive technology.
Employment and professional fulfilment. People need access to decent work suited to their interests and abilities, supported by effective targeted job placement and reasonable workplace accommodations.
Health, rehabilitation and wellbeing. Timely healthcare, continuous, high-quality rehabilitation and psychological support are needed to address the emotional and social impact of a person’s condition.
Social life, leisure and relationships. People must have opportunities to develop friendships, take part in cultural, sporting and recreational activities, and experience fulfilling personal and intimate relationships.
The needs of families
The family is often the main source of support, but without structural safeguards it risks emotional, physical and financial overload.
Recognition and support for family caregivers. Those providing daily care, often women within the family, need legal and social security protections, psychological support and the chance to remain in employment.
Respite care. Short periods of support at home or in day services allow family members to rest, manage personal or work commitments and prevent burnout.
Financial sustainability. Families need adequate financial assistance, tax relief and benefits to offset the additional costs associated with disability, including private care, assistive devices and modifications to remove barriers at home.
Guidance, information and simpler procedures. The administrative burden must be reduced. Families need integrated access points for health and social services that can guide them through their rights, available services and procedures.
Planning for life after family caregivers are gone. One of their greatest concerns is the future of a person with a disability when parents or other family members can no longer provide care. This calls for early planning of shared housing arrangements and measures to protect the person’s financial interests.
Towards an integrated model
To address the needs of the person and the family together, welfare systems are moving towards a Budget di Salute—a personalized health and social support budget—and multidimensional assessment.
This model moves beyond standardized cash payments spread across many recipients. It favours an integrated plan of health, social, housing and employment support built around the person and their family, with a flexible, dignified and sustainable response over time.
4 The role of the community
How can local communities, social networks, volunteers and residents support people with disabilities and their families?
At a time when health and social resources are limited, communities, local organizations, volunteers and citizens as a whole must take a more active, responsible and organized role.
This is more than an ethical choice or an act of solidarity. It is essential to preventing families from becoming overwhelmed and people with disabilities from becoming isolated.
Where public budgets cannot cover every care need, communities cannot replace specialist healthcare or Italy’s essential levels of care (LEA). They can, however, make a decisive contribution by moving from welfare provided solely by the state towards community-based support close to home.
Making better use of resources and planning together
Third-sector organizations and volunteers often know their local areas in detail, in ways that large public administrations do not.
Identifying needs early makes it possible to reach people in vulnerable circumstances before those circumstances become more complex and costly emergencies for the public system.
Joint planning forums allow municipalities and local health authorities (ASL) to direct funding towards personalized initiatives such as the Budget di Salute, reducing waste and duplication of services.
Support close to home
While public healthcare addresses clinical needs, citizens can help with the relationships and practical tasks of daily life, easing the pressure on families.
Neighbourhood support networks can offer small everyday forms of help, such as accompanying someone to an appointment, helping with shopping or paperwork, or organizing leisure time.
Informal respite support from properly trained volunteers can also give caregivers a few hours’ break and help prevent burnout.
Shared housing and community assets
Communities can put unused buildings and other underused resources to work to create new housing options.
Community foundations, cooperatives and family associations can join forces on shared housing and planning for life after family caregivers are gone, creating small communities and supported apartments. This reduces reliance on large institutions and encourages greater independence.
A genuinely inclusive community
Citizens also have a responsibility to make existing places accessible.
If local shops, cinemas, sports clubs, parishes and other community spaces take steps to welcome everyone, families will no longer have to search for and pay for separate or specialist settings so their children can socialize.
An active community must not become an excuse for the state to withdraw. Instead, there should be a partnership in which public authorities guarantee rights and essential services, while local people create the relationships, inclusion and flexibility that no public resolution can generate on its own.
5 Perceptions of change
From the perspective of people with disabilities, is there a tangible improvement today in inclusion, independence and quality of life?
People with disabilities and their families experience a deep paradox: they recognize clear cultural and legislative progress, yet encounter a continuing and painful gap between real needs and the system’s response every day.
Society has changed over the past few decades. But bureaucracy, insufficient funding and fragmented services create the sense that improvement is uneven, often a matter of where a person lives or what they can afford rather than a guaranteed right.
Choice and independence
For generations, the response to disability was institutionalization or leaving all care to families. The person was treated as a passive recipient of care.
Today there is far greater awareness of the right to self-determination. People with disabilities assert their right to decide where, how and with whom they live.
Despite important reforms, such as Italy’s law on support for people with disabilities after family caregivers are gone and the decrees implementing the Disability Framework Law, tools for independence such as individual life plans and Budget di Salute arrangements have yet to become firmly established.
Many feel that independence remains a luxury for those with strong family support or the resources to pay privately for what the system fails to provide.
Services and bureaucracy
In the past, services were rigidly standardized and organized mainly around clinical and medical needs.
Today there is welcome movement towards a biopsychosocial approach that considers overall quality of life rather than just a diagnosis.
Public services are still often perceived as fragmented, slow and exhausting to deal with. Families frequently feel passed back and forth between local health authorities, municipalities and school offices.
Persistent shortages, from specialist support hours at school to rehabilitation and home care, force many people into prolonged battles for their basic rights, turning the welfare system into an obstacle course.
Community awareness and infrastructure
In the past, disability was often accompanied by stigma, shame or social invisibility.
Today, perceptions within the community have improved radically. There is much more information, awareness and attention to inclusive language. Citizens and third-sector organizations are seen as valuable allies.
Cultural awareness, however, has not yet been fully matched by accessible infrastructure.
People with disabilities find it deeply frustrating that, despite a community that is open in principle, physical and digital barriers remain widespread: inaccessible public transport, outdated schools and trains that cannot always be used independently.
They feel that the community wants to include them but often lacks the infrastructure to make inclusion possible.
Quality of life and regional inequality
Where a person lives strongly shapes their quality of life.
In Italy, people with disabilities can have completely different experiences depending on their region or municipality.
Where local welfare provision is strong and third-sector networks are well integrated, people see tangible improvements in employment inclusion and opportunities for leisure.
In more remote areas, or places where health and social systems face greater difficulties, people may instead feel abandoned, with their quality of life depending largely on how much their family can bear.
In short, people with disabilities feel that society is culturally more prepared for inclusion than institutions are structurally or financially equipped to deliver it.
The gap between expectations of independent living, encouraged by progressive laws, and a daily reality of inadequate services and persistent barriers remains a major source of frustration.
6 Good practices and the role of storytelling
Which experiences do you consider particularly significant and replicable? And how can storytelling help improve services and build a more inclusive community?
Innovative models in Italy and internationally show that rights can be turned into tangible realities.
In this context, sharing lived experience is an important way to turn awareness into organized action.
Good practices and replicable models
Successful projects move beyond simply providing care and focus on independence in housing and employment.
Shared housing and planning for the future. Inclusive housing options are increasing in Italy. Projects such as Domea in Lombardy bring people with disabilities and older people together in shared living arrangements based on solidarity, cooperation and universal accessibility, to counter loneliness and encourage independence at home.
The adoption of national guidelines on senior co-housing and intergenerational co-housing also helps establish this model as a social policy tool.
Integrated local networks. Initiatives in large cities such as Milan show the value of individualized pathways in which training providers, social enterprises, companies, healthcare and support services work together to help people enter employment.
Personal care budgets and independent living. Direct payments for self-managed personal assistance enable people with disabilities to hire and train their own assistants. This model, already well established in Northern Europe and present in some parts of Italy, shifts decision-making power from institutions to individuals.
The role of storytelling
Storytelling is more than a rhetorical exercise: it can advance inclusion and improve services.
Making services more personal. Systems based solely on standardized measures can end up treating people as problems to be “fixed.” Listening to people with disabilities and their families helps policymakers and health professionals understand real needs and design individual pathways that value each person’s talents and interests.
Self-awareness and resilience. Telling one’s own story can help a person with a disability recognize their rights as a citizen, make sense of their experience and counter social isolation.
Emotional engagement and challenging prejudice. Stories bring us closer to people’s feelings and aspirations, making accessible what reports and technical texts cannot always explain.
Through storytelling, including multimedia stories, communities can learn to see disability as one of the many facets of human experience, rather than a limitation or a tragedy.
Combining approaches built around independence, such as shared housing, with strong social storytelling helps people understand that inclusion is an investment in the sustainability and cohesion of society as a whole.
7 A final perspective
Is there an issue you consider especially important for understanding future priorities and challenges in the field of disability?
One crucial issue, among the most complex and urgent disability challenges in Italy, is the human and care experience of people with amyotrophic lateral sclerosis, or ALS.
ALS is not only a neurodegenerative disease with an exceptionally severe biological impact. It is also a stark example of how health and social care systems must evolve to respond to rapidly progressing disability.
The experience of people with ALS in Italy reveals three crucial priorities for the future.
Regional fragmentation and consistent care
Despite specialist centres and established guidelines, community-based care varies considerably between regions.
The transition from hospital to home care often involves administrative and financial delays.
Ensuring that every patient has immediate access to advanced assistive technology, such as eye-gaze communication devices, and multidisciplinary teams regardless of where they live can no longer be postponed.
The burden on family caregivers
ALS radically changes the life of an entire family.
In Italy, family caregivers often take on complex, round-the-clock duties requiring specialist skills, which can include managing mechanical ventilation, percutaneous endoscopic gastrostomy (PEG) feeding and continuous monitoring. They frequently do so without organized institutional support or adequate financial and employment protections.
The challenge is to recognize and support these caregivers through legal and financial measures, preventing isolation and burnout.
Self-determination and end-of-life decisions
As ALS progresses, patients face complex decisions about treatment, including whether to have a tracheostomy for invasive ventilation.
In this context, Italy’s Law 219/2017 on advance healthcare directives and shared care planning play a central role.
Respecting the patient’s right to self-determination, alongside timely access to palliative care that is not restricted to the very last days of life, is an essential ethical and care priority.
Social support plans
In Italy, social support plans for people with ALS largely fall under provisions for very severe disability and the need for long-term assistance.
Because these benefits are provided at regional and municipal levels, support varies across the country, although it follows some national priorities.
Important measures include respite services and emergency short-stay accommodation in properly equipped residential facilities, allowing family members to rest or respond to sudden emergencies.
The role of the third sector
Alongside the state, national associations such as AISLA, the Italian Amyotrophic Lateral Sclerosis Association, supplement public provision with practical forms of support.
These include Operazione Sollievo, which provides additional financial support for family assistants, accessible transport and assistive equipment for people with ALS.