Down Syndrome Day: Coronavirus affects disabled people hardest

Today, the world is marking Down Syndrome Day. Normally, on this day we work hard to raise awareness of what Down syndrome is and what it means to have Down syndrome, but in the light of a global health threat that coronavirus pose, we want to stress that persons with disabilities are especially affected by global pandemic and must adequately be included in all response measures.

In several countries and on global level, persons with disabilities have spoken out that government information is not being shared in accessible formats or that measures are not made to compensate for reduction in support services that persons with disabilities depend on. The UN Special Rapporteur on the Rights of Persons with Disabilities has made a statement that can be read here.

"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," reads the statement.

Here are some practical advices to institutions and individuals included in the response measures:

1. All response efforts and emergency preparedness needs to be inclusive 

It is crucial to make sure that all efforts made to contain the virus and manage the cases are inclusive. Inclusive programming includes spreading awareness on the situation of persons and children with disabilities and COVID-19. It also includes making all information and activities accessible so they can equally benefit persons and children with disabilities as they do everyone else. Some of the measures need to specifically target persons with disabilities, such as social protection measure to maintain continuity in support structures. 

2. Persons with disabilities and their representative organisations must be involved in all response stages

Persons with disabilities are the true experts on how to include groups with different impairments in all response efforts, preparedness, information and service delivery. The disability movement has a slogan of ‘Nothing About Us Without Us’ to reinforce the message that all things done to promote the rights of persons with disabilities needs to include persons with disabilities. This is particularly true in times of crises where measures to protect excluded and stigmatised groups often fall behind.

3.  Persons with disabilities are one of the high risk-groups

Although disability in itself does not put a person in a high-risk group, persons with disabilities are more likely to have accompanying chronic health conditions that can worsen the effects of the virus. Information about the Coronavirus is everywhere but there is still little information on what to do if you belong to a high-risk group resulting in a high number of calls from persons with disabilities being worried.

4.  Saying “Don’t worry, it is only dangerous for the elderly and those with pre-existing or chronic health conditions” is inappropriate

This type of expression does not align with a human rights based approach. As an organisation, Save the Children supports not only the Convention on the Rights of the Child, but also the rights of all people everywhere, and the Convention on the Rights of Persons with Disabilities. The expression also plays down the importance of vigilance to contain the virus. It is important to protect children with severe and complex disabilities from such messages where they are referred to as the ‘sick’ or ‘weaker’ part of society as this has a negative impact on self-esteem and self-worth.

5. Public health messages MUST be provided in different and accessible formats

As people both communicate and understand information differently, it is absolutely crucial to provide information through a range of communication formats. If not, things can go wrong. Information should, in addition to being child-friendly also include audio, large print, easy read, pictures and sign language. Information hotlines should exist in texting and email format for those who are hard of hearing. See examples in each link.

6. Disrupted routines can be difficult for children on the Autism Spectrum or others who require reliable routines.

With disruptions to daily routines such as not going to school, not going on the daily walk or being able to access the usual food, families with children with disabilities can experience high level of stress and can often need additional support. Many children or parents are used to certain structures which, when disrupted, can cause challenges in the home and further put children with disabilities and their siblings at higher risk of distress or abuse.

7.  Accessing regular medication can become harder

Many children with disabilities require regular prescriptions and medications to stay healthy and functional. With disruptions to health systems and reduced ability from health clinics to provide standard care, children with disabilities may miss out on important medication to stay healthy. This is particular true where health services are already discriminating against persons with disabilities due to stigmatising misconceptions or lack of awareness.

8.     Persons with disabilities may not be able to follow the recommended precautions on how to protect oneself 

Many persons with disabilities rely on assistance and support from others to do things during the day. This includes washing hands, eating, dressing, holding something to cover a sneeze, throwing away a paper tissue, washing clothes etc. When you need someone to support you in your daily routine it may not be possible to self-isolate both in terms of getting through the day or by making the necessary preparations for social distancing. Stocking up on groceries or getting groceries home when also requiring support becomes another challenge. Children are particularly vulnerable, but also young children of parents with disabilities can be affected.

9. The Coronavirus outbreak can reduce independence and increase vulnerability 

Personal assistance and support is key for many persons with disabilities to live independently.  Quarantine and social distancing situations can weaken the system and network of assistance aimed to support persons with disabilities to live independently in the home. Daily living can further be severely affected if key personnel or family members get infected and thus cannot perform their regular support tasks. We have all heard of the 16 year old boy in China who lived with Cerebral Palsy and died due to neglect when his father was unexpectedly taken into quarantine without being able to make arrangements for his son. A decision to put oneself and a carer or assistance at risk further complicates the situation. This is particularly true in residential facilities. Cutting contact with loved ones and support networks can leave persons with disabilities, particularly children, totally unprotected from any form of abuse.

10. Closing of residential schools and day centres can put persons with disabilities at risk of abuse

In the case of residential schools and day centres closing down or cancelling services, provisions have to be made to strengthen home care and activities. As children with disabilities may need additional care compared to other children, families who are not used to having the child home full time may struggle, which can put the child at risk of abuse, neglect and violence. Abrupt and unforeseen changes in primary care givers and safety networks can further cause psychological harm to the child.

Save the Children’s work in the area of inclusive education

Save the Children has been working for many years to develop inclusive education in BiH. During 2019, we supported 20 schools in the Tuzla and Sarajevo Canton with equipment and infrastructural adjustments to increase the accessibility of these schools for children with disabilities. Since May 2018, we are implementing “Inclusive4All: Inclusive Education for all children in Bosnia and Herzegovina” project in Tuzla canton, funded by the Italian Agency for Development Cooperation (AICS). This project is in a way a continuation of our successful work started earlier in Una-Sana Canton. The project Inclusive4All aims to enable children with disabilities to develop their potentials and fully enjoy their right to education and social inclusion. Children with disabilities have the right to learn from quality inclusive education and to be included in all aspects of society. Parents and caregivers are capacitated and empowered to support their children better. This will be reached through the provision of a wide range of services, provided at the Centres for Development of Inclusive Practices (CDIPs) established by the project in the Municipalities of Gradačac and Banovići and earlier in Bihać and Cazin.