People with disabilities in war: a complex problem in simple words

What is the problem?

In times of war, people with intellectual disabilities (ID) can be the first civilians to experience unique threats to their livelihood and health. They may not be aware of the risks and often cannot avoid them if they have difficulty understanding publicly available safety information. Sirens and explosions can frighten them profoundly, and a change of environment and place of residence can destabilize. The difficulties that have become routine and familiar for most Ukrainians living under russia's armed aggression can present major difficulties that people with ID especially struggle to cope with.

What is the solution?

Today, the Ukrainian NGO "Coalition for the Protection of the Rights of Persons with Disabilities due to Intellectual Disabilities" has set out as it's mission to protect the rights of those most vulnerable to adaping to the new realities of full-scale war. Rubryka discussed the challenges brought to people with intellectual disabilities and their families with the Ukrainian NGO's head, Yulia Klepets, to learn about what the coalition is doing to overcome these obstacles.

How does it work?

The daily routine of a person with intellectual disabilities is carefully shaped for years: a circle of close friends, family, and acquaintances gradually forms as regular activities crystallize as the family gets used to the daily rhythm, with all its nuances and pecularities Thanks to the combined efforts of the family, social and medical professionals, a fragile  system of individual support is built up with care and caution. The goal is to help an adult living with intellectual disabilities to lead a happy and fulfilling life to the best of their ability. 

Before the war, people with ID attended engaging classes and master classes, found ways to stay active by doing errands in their community, and we're included by friends and relatives in celebrating normal occasions like birthdays, family holidays, festivals, or sports competitions.

The outbreak of war disrupted that carefully-constructed balance in an instant. More than 261,000 Ukrainians with disabilities due to intellectual and psychosocial disorders were affected when care centers closed, and access to psychiatric care was left to the wayside, behind other priorities. People with ID who require regular visits with specialists for behavioral disorders or neurological care for epileptic seizures were left without the attention they need. 

Such sudden life changes could cause anyone   a feeling of powerlessness, irritation, and anxiety – and for people with ID, it often worsens the behavioral disorders they are already struggling with.

Given the current situation in Ukraine, people with intellectual disabilities are likely to be confused about  what is happening around them. Not only are the people and environment around them stressful, but when they are then unable to return to familiar activities, people, and surroundings, the invisible mental anguish can be no less painful than physical wounds. Care workers report a spike in cases of aggression and self-harm observed in people with behavioral disorders. "It is a pain and despair that a person cannot keep inside," Klepets explains.

Easy-to-read format

The coalition conducted two surveys on the needs of people with intellectual disabilities caused by war. It turned out that the top priority is the need for security, especially when people with intellectual disabilities have trouble understanding what the risks are. For example, people with ID may not want to go to the shelter during an air raid alert simply because they don't understand what is happening and what the danger is until it is too late . When evacuation is necessary, they might refuse to get into the car.

With this in mind, the Coalition  launched an information campaign called "About the war — in an easy-to-read format." The goal is to provide the necessary information about the war, security situation, and how to get support in a form that is accessible for people with intellectual disabilities.

With the support of the US State Department, the Ukrainian Rapid Response Fund program implemented by IREX helped bring this project to life.

"Unfortunately, before this project, we could not convince the national authorities that Ukrainians with intellectual disabilities should receive information from the authorities in an easy-to-read format and plain language," says Klepets, head of the Coalition. "Especially in times of war, it is important to receive accessible information on security issues because a person's life and health may depend on it."

Klepets says that reforms are needed, because the Code of Civil Protection does not contain provisions to ensure that  authorities notify Ukrainians with intellectual disabilities in the event of an emergency. "People with visual and hearing impairments have such a right, but our children do not," she told Rubryka.

As a result of the cooperation of the Coalition and the Ukrainian Rapid Response Fund, 45 information products were developed in an easy-to-read format, including 10 safety leaflets, 10 instruction guides on applying for help, and 25 weekly bulletins.

The publications use simple phrases and carefully explain terms that may be unfamiliar, about the situations that can arise during the war and how to respond to them: What to do when the siren turns on? How not to get lost during evacuation? To whom is it safe to show identity documents? What should be done when there are injuries nearby? Where to get help? How to interact with strangers? The materials put together by the Coalition are intended to answer these and other questions that may come naturally to most, but are extremely helpful to some.

The leaflets and instructions are designed with people with IP in mind, but can also be helpful for anyone after experiencing trauma or stress. They are also a great resource for foreigners who have just started learning Ukrainian, and for parents, specialists, authorities and even children. The Coalition is convinced that accessible language is critical in stressful situations because when people understand how to behave, they calm down and do everything correctly.

Other problems, other solutions

People with intellectual disabilities coping with war

This is Yulia Klepets and her daughter.

Klepets says that the war puts additional pressure on the families of people with intellectual disabilities, especially the parents. As they have to deal with their everyday lives while working and caring for their disabled children all at once, the NGO head says that the meager financial aid from the state aimed to elevate some of the pressure isn't enough.

Klepets also adds that the global community is convinced that a person with ID requires a personal assistant. Though it is an unprofitable occupation, Klepets says the state should allocate money for it to help families.

Unfortunately, the Ukrainian social protection system does not have a standard of social services for temporary work leave for parents who care for a child with a disability. Families overwhelmed by the burdens of war can quickly lose their ability to provide care, and assistance at the community level is reduced because of the war. As a result, thousands of people with intellectual disabilities are often sent to already overcrowded boarding schools.

The Coalition assists these families by paying for services for almost a thousand Ukrainians with intellectual disabilities in order to make life easier for mothers and fathers of people with intellectual disabilities. This help allows them to rest at least a little bit during the day, made possible thanks to the funds of philanthropists. With the combined efforts of 43 non-governmental organizations, the Coalition can provide personal assistants, daycare, social and labor adaptation workshops, psychologists, and other specialists.

In addition, the Coalition provides direct financial support to people with ID and their families and represents their interests at the international level. If you need help, you can get it here.

Does it really work?

Organizations that are members of the coalition are convinced that their work achieves real results. The Vinnytsia-based Open Hearts Association points out that thanks to the easy-to-read format, young people learning about current news in Ukraine and from abroad can better navigate the situation and their lives.

"Besides the news, information leaflets and instructions are extremely interesting. They describe today's topics and discuss obtaining important services or information. This greatly simplifies life and makes it possible to cope better with difficulties. Our young men and women love to discuss what they have heard and read, share their impressions and attitudes, and express their own ideas, which often supplement the information from the leaflets," the NGO shares.

Ludmyla Shakotko, head of the board of the NGO Nazustrich Doli in the city of Zhovti Vody, says that weekly readings help young people with intellectual disabilities become more active.

This is Anna Shtanko from Kharkiv. She and her family have stayed in Kharkiv almost all of the time since the beginning of the full-scale war,and says that if she had read materials about the war in plain language before, it would have been much easier for her to cope with her experience of the events. Now, she knows what to do in stressful situations, and can also share that knowledge with her friends and family.

The Coalition's easy-to-read initiative is about creating clear texts and promoting the right to accessible information in plain language.

"Since the state must provide information to people with disabilities in an accessible format, we appealed to the national authorities with the demand to enshrine this right in legislation. After analyzing the translation of the UN Convention on the Rights of Persons with Disabilities, we discovered inaccuracies: "plain language" was replaced by "ordinary language." But the presentation of information in a plain language requires efforts and resources, while ordinary language does not require such actions on the part of the state. Similarly, the format of easy reading was not precisely mentioned. We are extremely grateful to the Ministry of Social Policy of Ukraine, whose specialists accepted our appeals with understanding," says Yuliya Klepets.

After negotiations with the Ministry of Foreign Affairs, which is responsible for the official translation of international agreements, clarifications were made to the translation. From now on, available formats of informing people with intellectual disabilities have been legalizedю

Even more helpful solutions!
How can every Ukrainian help people with disabilities?

If you have the strength and good intentions, pay attention to people with disabilities and their families, and ask if they need help. Maybe you will become a friend of a person with intellectual disabilities, and perhaps you will help in solving household issues. According to Yulia Klepets, if the family of a person with IP says that nothing is needed, it does not mean that you cannot help in any way. If you have the energy, become a volunteer of non-governmental organizations for the protection of the rights of people with intellectual disabilities. "Your help will never be superfluous for us; we rely on volunteering," says Klepets.