Recommendations on inclusive policies from the global deafblind community.

In these times of turmoil, with the whole world severely affected by the Coronavirus (COVID-19) outbreak, combined with other critical incidents like the recent earthquake in Zagreb, Croatia, we must ensure that those who are the most left behind, neglected, vulnerable and exposed to double isolation in any crisis, persons with deafblindness, are also equally protected according to Article 11 of the UN Convention of the Rights of Persons with Disabilities (CRPD).

Representing between 0.2% to 2% of the global population, an estimated 15 to 155 million persons on earth experience combined hearing and vision impairments – deafblindness. Adding dual sensory impairment due to aging, the number rises to 6% implying as many as 467 million experience a degree of deafblindness during life[1]. This group of persons with deafblindness must not be neglected and forgotten during this time of crisis.

Furthermore, we would like to emphasize that the number of those persons rises with age, making the elderly in our society more vulnerable to the virus. Older persons with deafblindness experience a higher risk than most others as, in addition to being in the high-risk group due to age, they struggle to cope with both accessing and processing information, as well as resolving daily tasks such as shopping for essentials like basic food and/or medicine, a couple of examples among many issues being faced. The crucial fact is that the combination of their dual sensory impairment and age strongly impacts on and increases the complexity of their situation, increasing their need for proper services to reduce risk of serious and severe health complications due to COVID-19.

The General Comment No. 2 on Article 9: Accessibility of the CRPD commits state parties to enable persons with deafblindness to access information, communication and other services in order to live independently and to effectively participate in socitey.

That is why the European Deafblind Union (EDbU), according to the received inputs from its national members, compiled the following recommendations which are essential in providing the same standard of services and support to the deafblind persons in the everyday life and severe crises such as this pandemic.

The European Deafblind Union (EDbU), the African Federation of the Deafblind (AFDB), the Latin American Federation of the Deafblind (FLASC) and the World Federation of the Deafblind (WFDB) urges the UN, WHO, EU bodies, state parties and governments across the world to ensure that:

The importance of media access – All media communication should be in plain language and accessible for persons with deafblindness through (but not limited to) closed captioning, national sign language, clear-speech translation, high contrast and large print publications. It must also be made available at the same time while information is given.

Dissemination of official information – Official COVID-19 instructions, guidance and guidelines should be provided in accessible formats for Deafblind persons that includes large print and braille.

Access to Service Providers – All services provided to the public due to the COVID-19 outbreak like Red Cross services, telephone helplines and other providers of support and/or psychological help are accessible to all persons with deafblindness.

Access to Digital Media – Digital media should include accessible formats in plain language for deafblind persons. Special online access should also be given in plain text format (without any pictures and advertising) which may need adjusting if required. It is also essential for text and/or email messages to be sent with such information upon request.

Access to Personal Protection Equipment (PPE) – Urgent priority should be considered to ensure that all persons with deafblindness can be given priority access to protective gear such as masks and gloves due to the extreme difficulty of doing so because of mobility limits during lockdowns or impossibility to finding help.

Protecting the Deafblind interpreters (interpreter-guides) – The nature of our unique disability of Deafblindness encourages close proximity and touching of hands with Deafblind interpreters (interpreter-guides) which allows to follow information on the environment surrounding them and translations from spoken/written language. Therefore, Deafblind interpreters (interpreter-guides) who work in emergency and health settings should be given the same health and safety protections as other health care workers dealing with COVID19.

Awareness raising – Immediate awareness raising on support to Deafblind persons is essential and should be established together with national organisations who should also have a key role in protection campaigns.

Access to services while in quarantine or in need of medical help – During quarantine or when in need of health services, deafblind persons must have access to Deafblind interpreting services (including interpreter-guides), support services, personal assistance as well as physical accessibility. As such, persons with deafblindbess cannot be deprioritized on the basis of their disability.

Access to work and education – Remote work or education services must be equally accessible to all employees/students with deafblindness.

Restrictions during COVID-19 crisis – Measures of public restrictions such as gatherings limit of 2 persons in some places must consider persons with deafblindness on an equal basis with others. This is due to the fact that most, if not all, deafblind persons still need a Deafblind interpreter to help them to get all necessary instructions and information when they do not have family support or where alternative communication methods have failed, therefore, it is vital that our unique disability is treated with respect under such restrictions.

For DPOs representing persons with deafblindness we advise a reduction of all direct services and organise work from home if possible while still ensuring and continuing:

• Organisation of the Deafblind interpreting (interpreter-guide) services for persons with deafblindness, so that they can urgently reach out and help elderly and lonely persons with deafblindness
• The vital task to make sure that the most isolated deafblind persons receive the most urgent information, all conveyed in their preferred mode of communication, while also ensuring that they have prioritized access to food and medicines
• Recognition of deafblind persons – advise them to use red-white canes so they are more visible and/or hold at least an official card that indicates their deafblindness to the authorities and emergency services.

The European Deafblind Union (EDbU), the African Federation of the Deafblind (AFDB), the Latin American Federation of the Deafblind (FLASC) and the World Federation of the Deafblind (WFDB) are available to assist authorities and other organisations with guidance and information regarding the equal and accessible services as well as information for persons with deafblindness.

[1] https://www.wfdb.eu/deafblindness-and-inequality/

Photo source: https://www.brailleinstitute.org/event/aim-to-be-safe

GENEVA (17 March 2020) – Little has been done to provide people with disabilities with the guidance and support needed to protect them during the ongoing COVID-19 pandemic, even though many of them are part of the high-risk group, today warned the UN Special Rapporteur on the rights of persons with disabilities, Catalina Devandas.

“People with disabilities feel they have been left behind,” the UN human rights expert said. “Containment measures, such as social distancing and self-isolation, may be impossible for those who rely on the support of others to eat, dress and bathe.”

“This support is basic for their survival, and States must take additional social protection measures to guarantee the continuity of support in a safe manner throughout the crisis.”

The UN expert stressed that reasonable accommodation measures are essential to enable people with disabilities to reduce contacts and the risk of contamination. They should be allowed to work from home or receive paid leave to guarantee their income security. Family members and caregivers may also require reasonable accommodation to provide support to people with disabilities during this period.

“Access to additional financial aid is also vital to reduce the risk of people with disabilities and their families falling into greater vulnerability or poverty,” she explained.

“Many people with disabilities depend on services that have been suspended and may not have enough money to stockpile food and medicine, or afford the extra cost of home deliveries.”

Devandas also noted that the situation of people with disabilities in institutions, psychiatric facilities and prisons is particularly grave, given the high risk of contamination and the lack of external oversight, aggravated by the use of emergency powers for health reasons.

“Restrictions should be narrowly tailored, and use the least intrusive means to protect public health” she said. “Limiting their contact with loved ones leaves people with disabilities totally unprotected from any form of abuse or neglect in institutions.

“States have a heightened responsibility towards this population due to the structural discrimination they experience.”

The UN expert stressed that persons with disabilities deserve to be reassured that their survival is a priority and urged States to establish clear protocols for public health emergencies to ensure that, when medical resources are scarce, access to healthcare, including life-saving measures, does not discriminate against people with disabilities.

“To face the pandemic, it is crucial that information about how to prevent and contain the coronavirus is accessible to everyone”, she explained.

“Public advice campaigns and information from national health authorities must be made available to the public in sign language and accessible means, modes and formats, including accessible digital technology, captioning, relay services, text messages, easy-to-read and plain language.”

“Organizations of people with disabilities should be consulted and involved in all stages of the COVID-19 response,” Devandas concluded.

Source: https://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=25725&LangID=E

Today, February 2, 2020, when Sense International Romania turns 19 years old, we do not look back, but look forward.

Everything we have achieved so far is important, but everything we aim for for the coming year is equally important:

• We will organize several orientation and mobility trips for  children and young people with deafblindness from our projects.

• We will think and organize, for the first time, lobbying, advocacy and leadership courses for a group of young people with deafblindness so that they can make their voices heard;

• Together with Code for Romania, CSEI Timişoara, CSEI Oradea and Pavelcu High School, we will work on e-Sense, the first educational software dedicated to children with deafblindness, through a project funded by the Orange Foundation.

• We will start work on the first e-learning platform that will offer courses in the field of of deafblindness for teachers, parents, for anyone interested in this field.

• We will continue the tradition of organizing in schools across the country activities with hundreds of children to mark the Helen Keller International Feast.

• For the third year in a row, we will mark 3 December – International Day of Persons with Disabilities, in partner schools all over the country, an event dedicated to Mr Vasile Adamescu.

• In the autumn we will organize the First National Conference on Deafblindness, an opportunity for specialists in the field to learn from each other the latest methods and techniques of working with the child with deafblindness.

• We will continue to promote the rights of people with deafblindness by participating with the Sensory Tent Beyond Senses at events, conferences, etc. Call us and we’ll come.