"What will happen to my son when I am no longer here?!"
This is a question I often hear from elderly parents who have children with disabilities, even more so when the mother or father is already widowed and has only one child. I try to understand the worry, anxiety, and distress these parents go through. Although I am not a parent myself, I feel that these thoughts are not easy for anyone.
The lives of many families who have children with disabilities are filled with love, dedication, and sacrifice. However, there is also a deep concern that often remains unspoken: what will happen to these children when their parents are no longer around? This is a question that troubles many parents, especially as they grow older and begin to feel that time is not always on their side.
For many of these parents, the concern is not only emotional but also practical. They know that their children often depend on them for many aspects of daily life: personal care, medical decisions, financial management, and even emotional support. When parents begin to think about the future, they often feel great anxiety about whether their children will receive the same level of care, respect, and stability that they themselves have provided.
A common reality is that many families rely heavily on the parents themselves as the main pillar of support. Although in our country there are services and structures that provide assistance to persons with disabilities, parents often remain the ones coordinating everything-from medical appointments to daily activities. This means that as parents age or fall ill, the family begins to feel significant pressure to find long-term solutions.
In many cases, siblings become part of future planning. However, it is not always realistic to assume that siblings can or should take full responsibility. They too have their own families, jobs, and obligations. This creates a delicate situation where parents must balance the hope that the family will remain united with the reality that each person has their own limitations.
An important proposal that is often mentioned is the need for earlier planning. Experts in social services encourage parents not to wait until they are very old to start thinking about the future. Planning can include things such as financial trusts for children with disabilities, legal arrangements regarding who can make important decisions, and clear discussions with the family about responsibilities.
Another important aspect is the development of more independent or assisted living services within the community. Many families would like their children to live in an environment that feels like a home rather than an institution. Models of small homes within the community, with professional support, can offer a balance between independence and safety. These solutions can also reduce parents' fears that their children will end up in an impersonal setting.
It is also important that persons with disabilities, as much as possible, are involved in decisions about their future. Often, these conversations are avoided because of fear or emotions, but experience shows that many persons with disabilities can express their wishes about where and how they want to live. This helps ensure that plans are more respectful and realistic.
The community also has an important role. A sense of inclusion and solidarity can make a big difference. When families feel they are not alone, the emotional burden is reduced. Parent support groups, voluntary organizations, and local initiatives can help create networks of assistance.
Ultimately, the issue of the future of persons with disabilities when their parents are no longer around is a social challenge, not just a family one. It requires long-term vision, sensitive policy, and investment in services that place the dignity and independence of the person at the center. For parents, the greatest peace of mind comes from knowing that their children will be protected, respected, and surrounded by care even when they are no longer there.
This is the hope that unites many families: that the love and care they have given their children throughout their lives will continue, in some way or another, into the future.
Final point on guardianship.
Yes, under Maltese law, a guardian normally must be resident in Malta. This means that the person appointed as a guardian must live in Malta to legally fulfill this role.
According to the rules of the Guardianship Board:
The guardian must be at least 18 years old.
Must be resident in Malta.
Must accept the responsibility and act in the best interest of the person with a disability.
Must not have a conflict of interest with the person they represent.
The reasoning behind this is both practical and legal: supervision by the Court and the Guardianship Board requires the guardian to be under Maltese jurisdiction. The guardian must also be available to make decisions regarding health, finances, or care.
However, I feel that nowadays many families live abroad.
Sometimes, a relative who knows the person with a disability best may live overseas.
Today, technology and travel make it possible for someone to assist from a distance. We must not only be practical, but also give peace of mind to parents that their children will be in good hands, and not with people who do not know.
Ivan Bartolo is a Nationalist MP