Frank Kat has over 18 years of experience in the field of Deafblindness, working with a very wide range of people and organisations, mainly education, research and care. Frank has worked internationally, as a member of the Board of Deafblind International and being active as Treasurer, the Vice President and since 2019 President of Deafblind international. He has been the director of the Centre of Excellence on Deafblindness of Royal Dutch Kentalis in the Netherlands. He started at Royal Dutch Kentalis as the headmaster of Kentalis Mariella (MDVI) and later at the School for Deafblind children, Kentalis Rafael, in the Netherlands. Frank has a special focus on the development of children, information and communication technology and with a great passion for inclusive education and care.

This presentation is more about sharing a view. Deafblind International is the point of connection on Deafblindness worldwide. Its members and partners represent organisations who provide services in the field of Deafblindness. It is focused on the needs of individuals who are deafblind, their families and the professionals from the field.

Ever since we experienced the enormous impact of COVID-19, sharing practice based solutions, ideas and new research became more important than it was before. When the COVID-19 pandemic started the need for online communication became an issue that needed to be addressed and solved immediately because regular support and contact was in a lot of cases not possible anymore. Schools and support centres are often still closed and the continuous and ongoing situation with COVID-19 is affecting all our contact and communication.

However physical distancing is a new reality for everyone, a growing part of the daily work is done from home, with the challenge to maintain and improve connections and communication. All the members of our society are facing more or less the same obstacles and limitations and are depending on the same digital platforms in order to communicate. This brings the society in a completely different concept of contact and communication, and offers good opportunities for awareness raising and campaigns.

This workshop will discuss the importance of communication, focus on rights, but would like to discuss with you the opportunities and positive side of the effects and challenges we face.

https://www.deafblindinternational.org/

ANDREW BLAIKIE

Dr Andrew Blaikie is a Consultant Ophthalmologist in NHS Fife and Senior Lecturer in the Infection and Global Health Division team at the University of St Andrews. He has studied, worked and taught throughout Africa having been lead for paediatric ophthalmology at CCBRT Hospital in Tanzania and currently seconded to the Rwandan Charity Eye Hospital for 4 months per year. In the UK he was a member of the team that established the National Notification system for Childhood Visual Impairment. His main interests are frugal diagnostic and teaching simulation tools for low resource countries as well as neuro-ophthalmic diseases.

HELEN ST CLAIR TRACY

Helen St Clair Tracy is the parent founder and one of the lead writers for the charity, the Cerebral Visual Impairment Society of Scotland (CVI Scotland).  CVI Scotland’s website is used in one hundred and sixty countries and is considered the leading international resource.  Helen speaks nationally and internationally on CVI, including keynote, and is passionate about empowering with knowledge, particularly the families and those closest to affected people.  Helen works alongside colleagues from several universities, particularly the Universities of St Andrews and Edinburgh.

This year, due to Covid, many schools closed temporarily, and children were sent home, including children who are deafblind or have profound disabilities with multiple sensory impairments. Parents became teachers but many struggled for different reasons.

Parents and carers likely know their child better than anyone else, so learning at home should provide a great opportunity for the child, but many parents only have a basic understanding of their child’s educational needs in relation to their sensory impairments and rely upon teachers to guide them.

By upskilling parents with knowledge, the parent could lead and guide all aspects of their child’s development, working collaboratively with many professions who may support them. We explain our view of the important opportunities of parent led support.

Comprehensively teaching parents and carers presents many challenges, particularly due to different learning styles and abilities, especially where the subject matter is extremely complex. One way around this difficulty is to create quality and evidence-based simulations. Simulations are a way of showing the lived experience of the affected person, from their perspective.  Simulations can be a quick and efficient way of simply showing a person something that is otherwise very difficult and complicated to explain, taking a great deal of time.

In partnership, the University of St Andrews and charity CVI Scotland collaborate with many affected people in their community to create simulations of cerebral visual impairments called dorsal stream dysfunction.

Parent founder of CVI Scotland Helen St Clair Tracy will explain both the opportunities and challenges of teaching parents.  Dr Andrew Blaikie from the University of St Andrews will explain a little about the challenges of creating simulations of complex neurological conditions, and the great opportunities it gives university students to work on meaningful projects that will make a real difference to people’s lives.

Due to improved neonatal care CVI is becoming a more common condition seen in general pediatric ophthalmology clinics. Raising awareness amongst health professionals as well as parents and carers is paramount if we are to manage these children effectively.

The presentation will include a short video of some of the simulations work developed through this ongoing partnership.

Jonathan joined Sense in 2015.  He is responsible for leading our holidays and short breaks programme; quality assurance and safeguarding; volunteering; and the national arts, sports and well-being programme.  He also oversees the Sense Specialist Services for Children and Young People and is the strategic lead for ensuring that children and families get the best possible start in life.  He co-chairs our Sense User Reference Group to ensure that the people Sense supports are involved in our strategic plans and the way our services are developed and delivered. He is a registered social worker and has worked in social care services with people with disabilities for over 25 years.

The COVID-19 Coronavirus pandemic resulted in significant changes and challenges to the daily lives of us all.  For disabled people who access care and support, and their families, the impact of the pandemic has been much more pronounced.  For some of the most at risk and disadvantaged groups, they have been disproportionately affected by the pandemic.

People have felt forgotten and left without sufficient support, information and communication.  The support that they would usually access stopped – with many services closing overnight without warning.  People were left feeling anxious, isolated and without the vital supports and connections that enable them to live their lives.

As a charity providing social care and support to people with complex disabilities, Sense had to respond and adapt its support to keep people safe and well throughout the pandemic.  This bought many risks and challenges for the charity, including planning for the financial implications for commissioned and charitably funded services; managing the infection control requirements; sourcing appropriate personal protective equipment (PPE); ensuring appropriate levels of staffing across our accommodation services; and supporting people experiencing heightened levels of anxiety, distress and confusion about what was happening in their day to day lives and in the world around them.  We saw new and different types of behaviour from individuals in response to changes to familiar routines, structures and the impact of restrictions on important relationships.

However, the pandemic has also provided many opportunities and has shown how we can adapt our support to respond to these challenges and to reduce the disruption and impact for individuals.  We took a ‘whole organisation’ approach to planning and decision making.  Our services and staff teams demonstrated remarkable creativity, resilience and innovation in order to not only keep people safe but also to ensure that support was based on what was important to individuals.  Staff found creative ways to maintain contact with the family members of the people we support.  Information was provided in accessible and meaningful ways in order to help people make choices and stay in control, such as programmes of desensitisation to the use of PPE for people.  Our staff developed social stories and visual supports to help people to understand what they would experience and to provide the sense of structure and predictability they needed.

We moved our support for children, young people and families online to provide virtual activities and resources.  Our befriending services and social groups provided virtual sessions and distributed resources, including ‘buddy bags’ to help people feel connected with others and less isolated and lonely as a result.  Our arts, sports and well-being programme developed a virtual timetable of inclusive and accessible activities for people to access online.  We provided sensory equipment, IPads and software to address some of the challenges of digital exclusion and to enable learning from activities to be extended.  We have seen an increase in participation from skilled volunteers eager to reach out and engage people experiencing loneliness and isolation.

It cannot be underestimated that this has been an extremely challenging period that has required an immediate and flexible response.  This has required creativity, willingness, commitment and resilience in order to navigate this period and to find new ways to support and engage people.

Veslemøy Ytrestøyl has been working with deaf children for 25 years before she, 5 years ago, started her work with adults with congenital deafblindness at Signo Vivo, Norway. She is administering a house with five residents living at their own apartment within the house. Veslemøy is educated as a social worker. Throughout the years, she has added on to her education with pedagogical and psychological studies such as “Attachment and human development” and “Atypical communication” to mention some.

During the pandemic the Government and The Norwegian Institute of Public Health (NIPH) have given advice and information on how to prevent transmission of the coronavirus disease. As our residents are adults identified with congenital deafblindness, we have had to balance the NIPH’s measures for social and physical distance with the residents' need for interactions and communication based upon touch and closeness.

To prevent virus transmission the NIPH emphasized that a distance of at least one meter through the whole workday should be maintained, and avoid touching face and body. We immediately understood that we were unable to limit close contact between staff members and residents if we were to maintain meaningful interactions and communication. The staff members were challenged by their own fear of both catching the disease, and of bringing covid-19 to the residents by not following the measures. In our interactions with the deafblind residents, we focus on their need for access to our bodily responses and the sense of touch. Through these interactions, the residents have an opportunity to keep their anticipation, predictability and influence over their daily activities and everyday lives. To keep the closeness as safe as possible and to lower the risk of transmission, we had to alter the staff’s work schedule. By doing this, we experienced some new opportunities for togetherness. It also gave us new understanding and awareness of how much the staff work schedule impacts on our residents, when their predictability and understanding of time often connects to different activities and certain people.

The NIPH emphasized downgrading activities and limiting the numbers of close contacts. That gave the residents restricted access to different communities in society, where they usually enjoy participating. We increased social gathering within the residential unit. Our goal was to protect and shield the residents against possible infection from outside our working community. One of our concerns was to maintain predictability by replacing a known activity outside the residential home, with a safe substitute. The staff have been highly focused on identifying attention and interest expressed by residents, to be able to respond upon them, and offer meaningful interactions and activities. The staff have been challenged on creativity thinking to be able to meet the interests and needs of the residents.

The absent opportunity of visiting relatives, during lookdown, made us try out more digital solutions for togetherness. This has given us new opportunities for keeping in touch with relatives, which we will continue to use after the pandemic.

The pandemic has given us new insight of how our work frames and daily routines might give the residents less flexibility and impact on everyday activities. They have impressed us as robust and skilled at times with lots of changes.

RAMONA ANTONIE

Ramona joined SIR team in 2006 as a social worker, then HR Coordinator and afterwards as Programmes Manager. Before joining SIR, Ramona had worked for the Association “AS 2001 Alba Iulia” and the Counseling Center for Domestic Violence Victims, a service developed by Alba Iulia Town hall. She is licensed in social work and psychology, with a master degree in human resources management and in clinical psychology , with subsequent specializations in psychological counseling and couples, family and child systemic psychotherapy.

MĂDĂLINA SIMION

Mădălina is a final year student at the Faculty of Psychology and Education Sciences from Babeș-Bolyai University Cluj Napoca, specialising in Special Psycho-pedagogy (special education). During her studies at the School Center for Inclusive Education Elena Doamna in Focșani, she took part in many activities organised by Sense International Romania in her school. Herself a young woman with deafblindness, she became a volunteer of Sense International Romania:

”One thing which I learned from Sense is that disability does not define you, it doesn’t impose limits on you, but it reconstructs you. It opens your eyes towards a horizon that many don’t see. It gives you the chance to develop what many people see as a “disability” into an “ability”. To me, Sense means dynamics, opportunity, equality, courage and love. For people and for a change for the better. As it should be in and about the life of an individual.”

VIOREL DUMITRU MICU

Viorel Micu is a member on the Board of Sense International Romania. He graduated from BabeșBolyai University Cluj Napoca, Special Education Faculty. For 15 years, he has been the guide-interpreter for professor VasileAdamescu, a person with deafblindness, and together they worked a lot in the field of deafblindness. He had the opportunity to work directly with children with deafblindness and multisensory impairments, having a contribution in their education.

The objective of this workshop is to facilitate the sharing of personal experiences during the state of emergency and afterwards, the state of national alert, the challenges of the current times, as well as becoming aware of the power we have to adapt to the general context and to discover ourselves differently.

The year 2020 is a year that came with major challenges, as we experience everyday what it feels like to live with the fear of becoming infected with the virus Sars-Cov-2 or to protect those more vulnerable than us.

In time, we each developed our own diverse means to deal with the situation. For some people, it is more natural to be prudent, so they took extra measures: wearing masks – simple or adapted, gloves, disinfectants, physical distancing etc.

For other people, the natural means taking into account the legal safety measures, but also to trust the resilience of their own body to prevent any potential disease. And for other people, the natural means almost totally limiting contact with others, getting out of their home only when absolutely necessary, be cautious in any human interaction.

It is important to emphasise that these types of action depend a lot on our professional and educational background.

All these examples of natural ways in which we act when we want to make sure that, as far as possible, we are safe and enjoy emotional comfort.

The guests of this webinar are Mădălina Simion, a volunteer in the organisation and a university student studying special education and Viorel Micu, interpreter for Mr. Vasile Adamescu, member on the board of Sense International Romania and responsible with the safeguarding system within the organisation.