We have always been interested in the question of what happens to people with disabilities and their families when hard times unfold. None of us could have imagined at the start of the year that we would soon be confronted with COVID, with enforced lockdown a widespread reality. COVID-19 has laid bare and exacerbated pre-existing long-term structural inequalities and social vulnerabilities.
Many families have struggled to cope with the closure of schools; with record numbers of people having lost their jobs, many others have lost friends and loved ones to the virus. The challenges were even more complex, intense and demanding for families who have children with disabilities and who also had to cope with the loss of supports related to their child’s disability.
COVID-19 continues to challenge the fabric of everyday life as physical distancing becomes an established reality. Disruption of schooling, and of social and health services have had a devasting effect on families and their ability to access support services. Multiple media reports have starkly documented accounts of individual isolation and family desperation in a bid to cope with the unprecedented circumstances of service unavailability.
Alongside this, a new phenomenon is emerging globally—as existing community networks of support appear strengthened during the COVID crisis. Anecdotal evidence has demonstrated the importance of community in building resilience and coping, resulting in less dependence on services. This shift in thinking shows us that there is another kind of power, based not on resources, things or attributes but rather rooted in the social and cooperative relations in which people are enmeshed by virtue of communal life.
It is becoming clearer that relationships are the most critical resource we have, and that these relationships matter even more in times of crisis. We have seen that relationships at neighbourhood level have been the essential determinant of our ability to successfully navigate the COVID-19 public health emergency. Quite simply, without the support of our families, our neighbours, and our communities, many more of us would not have survived the crisis.
We know that families connected to Leap who, prior to the pandemic, have spent time investing in relationships and belonging (in their social roles and social ties) have proved more resilient during this time. People’s chosen, extended, and freely given reciprocal relationships have proven to be the core support relationships in this time of crisis. This understanding directly reflects Leap’s philosophy. It highlights the importance of strengthening community connectedness and the development of strong networks of support.
For many families who had relied solely on external programmes and paid professionals, the pandemic saw the collapse of their support architecture. They were thus thrown back entirely and unexpectedly onto their own resources. In spite of the fact that services were established to benefit people with disabilities and their families, the reality is that they have not been the primary beneficiaries during the current public health crisis.
The system which funds disability services must become flexible enough to be able to put resources, including cash, in the hands of people and their families in times of great need.
COVID-19 has plainly exposed the danger of putting programmes and services at the centre of disabled people’s lives. It has revealed what we always knew — that an unintended negative consequence of programmes and services is that they divorce people from the sources of natural supports in their lives. Immersion in community is the only safe and sustainable future for each and every one of us. It is also what determines our human well-being.
We believe that many families are really beginning to understand the importance of living (and ageing) well in place with adequate supports. It is now long overdue for the provision of supports to be moved ‘upstream’ where the focus can be on growing the social determinants of health and well being to create greater inclusion and belonging and to build relationships.
Now is the time to prioritize connection and to show families what to invest in. To assist them to work out what they can do without help, and what they can do with allies and outside support. When we demonstrate to families that this investment can produce better life chances and be more impactful than relying on programmes and services – it frequently transforms their thinking on these issues. We believe that services and professional roles should be there as a back-up, when families and the community have done what they can do.
Leap will continue to focus on the following elements:
- Assisting families to build inclusive lives in the community.
- Supporting families to develop strategies and skills to build inclusion in their communities.
- Developing resources for Inclusive Education.
- Providing a comprehensive information and advice service to families.
- Offering an independent planning and facilitation service to families.
- Developing resource materials to support inclusive pathways for people – resources include research, workshops and seminars, events, brochures, and leaflets.
- Collaborations with groups and organisations that share our values.