Webinar: civil society support for persons with disabilities, 5 November
Report by Biljana Radonjic Ker-Lindsay, BEARR Trustee
The BEARR Trust webinar on 5 November explored how service providing and advocacy disability CSOs are supporting persons with disabilities and their families in the EECCA region during the COVID-19 crisis. Particular attention was paid to their activities to address COVID-19’s impact on community inclusion and to promote equal rights for persons with disabilities amidst lockdowns, social distancing and economic downturn. The webinar featured three speakers from different parts of the EECCA region – namely Gulmira Kazakunova from Ravensto, Union of People with Disabilities from the Kyrgyz Republic; Maia Shishnashvili from Movement for Changes from Georgia; and Anna Bitova from the Centre for Curative Pedagogics in Russia – who shared their experiences of promoting disability rights during the pandemic, the challenges they face, and ideas for future projects.
The main challenges COVID-19 has brought to the disability community
The speakers agreed that the COVID-19 has generated numerous challenges for people with disabilities and their families as well as making the work of disability CSOs much more difficult. First and foremost, the virus has had a devastating impact on the physical and mental health of people with disabilities, who are more vulnerable to infection and have a higher death rate than average citizens. At the same time, the accessibility of health services has deteriorated as health systems have focused on COVID-19. People with disabilities are treated as chronic patients and not as a priority, so many planned procedures have not been offered in time or at all, which has had a detrimental impact on their physical health.
In addition, according to Maia, national lockdowns and social distancing rules have led to increased isolation, which has further exacerbated the challenges to the mental health and wellbeing of this group, causing fear, disillusionment, frustration and depression. Family members – especially parents of children and adults with disabilities – have been particularly affected as their caring responsibilities have become more challenging in the absence of publicly provided services. Gulmira said that this group also tends to be poorer than the general population, which adds another layer of difficulty in weathering the pandemic. For example, single parents caring for children with disabilities often use day centres not only for special education, but also as a place where children receive free meals every day, which has become impossible under lockdown. People living in regions far away from capital cities have been further disadvantaged by the inability of CSOs to travel due to the pandemic rules. The digital divide between capital and regions and between people with and without disabilities when it comes to access to computers and the internet and level of digital skills has also been evident.
In most countries, governments have not made the needs and rights of people with disabilities a priority during the first months of the crisis. Governments’ social service provision has become inadequate or stooped altogether, while rehabilitation and therapeutic activities have been negatively affected by staffing shortages and reduced funding, which has made autonomous and independent life for people with disabilities virtually impossible. After the huge spike in volunteering and donations in the first phase of the crisis, funding and voluntary work subsided in later months, putting additional pressure on the financing of CSOs.
As Gulmira reported, the level of discrimination, domestic violence and abuse has also risen during the pandemic, especially for women and girls with disabilities, while existing safe houses for victims in the Kyrgyz Republic were unable to accept new entrants. Disability organisations have also faced operational challenges due to the lack of freedom of movement and reduced funding. According to Maia, implementation of many existing CSO programmes has stopped, such as professional and vocational courses, public awareness activities and capacity building of disability CSO peers. Making matters worse is the fact that most of the leaders of disability CSOs tend to be carers of people with disabilities who have been struggling to reconcile their professional and caring duties during the pandemic.
How have disability CSOs reacted to the Covid-19 crisis?
According to Gulmira, although online channels do not work as well as face to face contacts for people with disabilities – especially those with severe intellectual and developmental challenges – the CSOs had to move most of their activities online. Gulnara’s own CSO, for example, had to revise its approach and adopt new formats and new technologies. They have started online peer-to-peer consultations, counselling and training and awareness raising. After some time, they realised that online work presents opportunities to reach out to larger segments of the population. They have also adapted the Helsinki University training module on people with disabilities for social care students in Kyrgyz universities and for service training for medical doctors, endorsed by the ministries of education and health respectively.
Maia’s organisation was concerned that new rehabilitation and therapy services in community-based housing could lose funding and risk permanent closure. So they mobilised supporters, launched online meetings and discussions and managed to secure the necessary funding. The CSO partnered with epidemiologists and started COVID-19 pandemic preparedness emergency support by producing guidance for community-based residential settings and institutions which were adopted by the Georgian health ministry. They also conducted training for people with disabilities on how to protect themselves from COVID and started outreach activities to reduce the social isolation of people with severe mental and intellectual difficulties.
Anna’s CSO has been in constant dialogue with the government, including weekly meetings with relevant ministries, pointing out the numerous challenges facing people with disabilities such as the lack of PPE and weak support for families caring for people with disabilities in Russia. They also continued most of their activities online and deployed large number of volunteers who supported people with disabilities by bringing medicine, basic utilities and food to their homes.
What needs to be done in the near future?
The panellists agreed that the following activities were needed:
- CSOs need to continue to advocate for further relocation of people with disabilities from large institutions into smaller community-based housing. The COVID crises has shown that large institutions only heighten the risks, as is evident from the high infection rate of both patients and professionals in institutions despite complete lockdowns introduced to protect their health.
- More needs to be done to help people with disabilities remaining in institutions, more than 1 million in Russia. The lockdown has meant no access to communication leading to even further isolation among this group.
- More emphasis needs to be put on education for children with severe disabilities in their homes in collaboration with schools and families via online education platforms combined with face to face visits whenever possible.
- More outreach and support is needed to stop the deterioration in parents’ and carers’ mental health through promoting better self-care.
- Better personal assistance service are needed to help adults with disabilities with autonomous and independent living.
- New skills needs for people with disabilities must be met, such as training in new technologies and new professional, vocational and soft skills required for the COVID and post-COVID world.
- Innovative ways need to be found to reach people with disabilities and their families in remote regions where online support may not be possible due to lack of necessary infrastructure, access and skills.
- CSOs need to work closely with governments. For example, they could produce advice and recommendations for the next phase of the COVID crisis on how to reduce more effectively the impact of the pandemic on people with disabilities and monitor the progress of the measures undertaken, based on lessons learnt so far.
- New ways need to be identified to attract and train more volunteers and to fundraise for donations that can be sustained in the medium to long term. For example, instead of CSOs speaking on behalf of people with disabilities, CSOs need to use both traditional and social media channels professionally and creatively in order to help people with disabilities and their families share their personal and emotional stories about everyday life challenges which can be inspirational for the general public.