For persons with disability and their families, this period is one of the darkest ones in many years, for many reasons.

Firstly, there is the fear for their own lives or those of their loved ones. For many persons with a disability, chest infections are more common than for others, so catching this virus could easily mean extended hospitalisation and even death. At a time when everyone is concerned about their future, the disabled and their families are on the most rugged of paths. 

If things got out of control, as has happened in neighbouring countries, and access to life-saving procedures such as ventilation became limited, how would persons with disability fare? And if they make it out of the hospital, will they continue to receive the support that they need? I can tell you that these thoughts have crossed the minds of many who are living with a disability or love someone with a disability.

All this means that the priority right now is to avoid catching the virus and staying at home, but this is not as easy as it sounds.

Many families with disabled persons living with them had some form of help in their home or some sort of respite. Such support was necessary, especially if the parents taking care of the disabled person are advanced in their age. To avoid exposure, community care and respite services have been curtailed, making it increasingly difficult for the families involved. Such families need more than an e-mail to feel supported.

Their routine has been disrupted and this is harder to cope with than for others

This pandemic is also highlighting the dangers of large caring homes for persons with disabilities and the importance of increasing at-home care. Most people infected with the virus worldwide were in nursing homes.

Large group settings are riskier for people with disabilities, and thus we should be moving at a faster rate towards community-based and home-based services to not only ensure that they are in a safer place but also so that they are integrated within their families and communities.  

As things stand, some parents have been prevented from seeing their disabled children who are in a caring home for two months now because of the pandemic. These families feel helpless and worried about the well-being of their children.

More tangible support is needed for those people with disabilities living at home and their families. Care workers need to be made more available to such families who are screened and given the adequate protective gear. 

For people with developmental and intellectual disabilities, this scenario is disorienting, no matter if they are in an institution or at home. Their routine has been disrupted and this is harder to cope with than for others. Trying to deal with the crisis and tantrums is not easy, especially when they get older and stronger. 

For younger children that have been following more intensive therapies and their families, this is also a difficult time when many fear regression. Such families spend years and their savings on such therapies and hope that whenever we get out of this, not everything is lost. 

All lives have equal value. Pain or suffering or disability, for many, are not compatible with their idea of a good quality of life. But the experiences of people with disabilities and their families tell another story – a story of resilience and joy in the unexpected.  

The community has a collective responsibility to show that it believes in the value of human life, in whatever circumstance, by recognising these challenges and providing the much needed support.

Karen Buttigieg, Committee member, National Parents Society of Persons with a Disability