Ukrainians with intellectual disabilities and their families surviving the war. Their experience, their needs now and in near future.
Report by the Coalition for Protection of Rights of Persons with Intellectual Disabilities. (Edited from original post.)
The large-scale invasion launched by Russia against Ukraine on February 24, 2022, has affected all Ukrainians. Still, people with intellectual disabilities were under pressure before the war already:
- They experience prolonged stigma, isolation, and barriers to accessing community support.
- They are even more seriously affected by the lack of recognition of them as individuals, and the possibility of realizing all human rights on an equal footing with others.
The care responsibilities fall mostly on their families, especially mothers.
Undoubtedly, the war doubled the pressure.
The All-Ukrainian NGO Coalition for the Protection of the Rights of Persons with Disabilities due to Intellectual Disabilities is a network of 118 NGOs and support services. The Coalitions represents about 14,000 families.
We considers it necessary to describe how this double burden of the war affects us. This report is based on numerous reports from our network, as well as on data from two polls conducted by the Coalition in April and May 2022.
The report contains both a description of the 100-day war experience, and a vision for Ukraine’s post-war revival.
Thank you for support!
All 14,000 families of Ukrainians with persons with intellectual disabilities, united in the Coalition, express our deep and heartfelt gratitude to all those who helped us during these 100 bad days.
It is both a sense of a common global network that supports Ukrainians with intellectual disabilities, and the much-needed practical help that has helped us survive and continue to care for our loved ones.
Sincere gratitude to all national authorities, and especially:
- The Cabinet of Ministers of Ukraine, which managed to extend all social benefits, including disability and care allowance for persons with intellectual disabilities, and coordinated the efforts of ministries to evacuate them, including those placed in boarding schools, psychoneurological and other institutions;
- Ministry of Social Policy of Ukraine, which initiated a bylaw on placement of incapacitated persons;
- Office of the Ombudsman of Ukraine for the continuation of monitoring visits to psychoneurological institutions;
We truly thank all the international partners who began their support from the first days of Russia’s large-scale attacks on Ukraine.
With a powerful fundraising campaign across Europe, providing the first tranche of European aid on March 8!
During the first 100 days of the war we received from Inclusion Europe 60,000 euros, which allowed to:
- pay individual cash contributions the amount of 3,470 UAH to 470 Ukrainians with intellectual disabilities;
- provide 10-day care for 8 persons with intellectual disabilities and temporary rest for their families;
- restore windows in the NGO “Logos” from Chernihiv, broken during the bombing;
- hire personal assistants.
More donations were transferred to local NGOs (members of the Coalition) to provide even more individual financial assistance to families, pay for the services of personal assistants, basic necessities, and resume NGO services. [Inclusion Europe fundraiser provided over 200,000 euros to the VGO Coalition and their local members during the 100 days. Next payment of similar amount is being processed at this time. The fundraiser has so far collected over 500,000 euros in total. – IE]
The Danish NGO AMIS DK kindly donated financial aid to the Coalition, and hosted two groups of refugees with intellectual disabilities and their families (38 in total). In the format of financial support to AMIS.DK, the Coalition received a donation in the first days of the war, in addition, AMIS coordinates a grant from the Danish government to provide individual cash grants to 236 families and pay for 10 personal assistants. In total, the amount of support for AMIS.DK is about 60 thousand euros.
Ceva de spus
The Romanian NGO Ceva de spus, whose sincere donations of $ 12,000, and humanitarian aid have provided significant support to more than 70 families.
The Lativan organisation “Viltis” for great moral, financial and humanitarian assistance. The Viltis team sent a huge amount of humanitarian aid to Ukraine: food, medicine, clothing, hygiene items and many other things needed during the war.
- Benjamin Braun, a volunteer from Germany and his communityEvangelisch-Freikirchliche Gemeinde Berlin-Köpenick
- The BRAIN Foundation, USA and MedicalMine Inc
- The National Assembly of People with Disabilities of Ukraine
- Social Work 4 World Initiative (SW4P), incl. International Association of Schools of Social Work
- Psychological Support Group (USA)
- ENVERA – ASOCIACIÓN DE EMPLEADOS DE IBERIA, PADRES DE PERSONAS CON DISCAPACIDAD (Spain)
- Special thanks to the volunteers who coordinated, managed and distributed humanitarian aid.
Situation before the war
261,000 Ukrainians have disability status due to intellectual and psychosocial disorders (end of 2017, Cabinet of Ministers of Ukraine).
About 41,000 of them have been declared incompetent by a court, thus deprived of basic human rights (for example, voting, working, marrying). All decisions in their lives are made either by guardians or in an institution (if a person receives round-the-clock care for decades).
- State guarantees include psychiatric care and treatment, free basic psychiatric treatment, disability benefits, care assistance for persons with disabilities of groups 1 and 2, special or inclusive school education.
- Comprehensive rehabilitation and community services (including livelihoods, supported employment, personal assistance, etc.) are available for those lucky exceptions whose local government initiates community inclusion.
- The vast majority of people with intellectual disabilities are offered institutionalization if the family can no longer provide care.
- In 2021 the queue for psychoneurological boarding schools (institutions for people with intellectual and psychosocial disabilities) was a total of about 4,000 people.
Thus, before the war there were no separate statistics of Ukrainians with intellectual disabilities, no supported housing, no guaranteed employment, no procedure for switching to another type of support for an adult with intellectual disabilities in case of death of the mother or her illness.
The first major stress for Ukrainians with intellectual disabilities was the Covid-19 pandemic, when 24-hour services were abruptly closed and families experienced difficult behaviours from loved ones due to such a sudden change.
Day care programs discontinued
In 2008-2019 the Coalition implemented a day care program in groups of 8 in 38 NGOs (covering more than 300 people in total) at public expense.
However, in 2019, the Ministry of Social Policy stopped financial support for the day care program, explaining that a new system of support for individuals with intellectual disabilities had been introduced.
A few weeks before the war, the Coalition asked the national authorities to change the situation, but the proposals were rejected. The main priorities of the Coalition’s pre-war advocacy were as follows:
- support at the expense of state funds for supported living, which is not more than the cost of institutional services;
- day services (employment assistance and work with support);
- supported decision-making against incapacity and guardianship;
- legalization of easy-to-read format and clear language for access to security information;
- public funds to support the family: rest, personal assistant;
- foster family for adults with PE if the family can no longer provide care.
In addition, there was urgent need of financial and institutional support to self-help groups, and NGOs of Ukrainian parents of sole proprietors should receive state-funded institutional support in accordance with Articles 4.3 and 33.3 of the CRPD.
Ukrainians with intellectual disabilities during the war (April 2022)
Representatives of 30 non-governmental organizations of individuals with intellectual disabilities claim that the war had a huge impact on Ukrainians with intellectual disabilities. In addition to common problems for all Ukrainians, namely: loss of housing, death of family members, job loss, changes in housing, drug and food shortages, financial difficulties due to rising prices and job losses, and some specific tasks are identified below.
In addition, the needs of families, the activities of local NGOs, the impact of international financial assistance from Inclusion Europe and the expected needs in 2-3 months (summer 2022) were identified.
The impact of the war on Ukrainians with intellectual disabilities
Ukrainians with intellectual disabilities have experienced specific negative effects caused by the war, namely:
- fear of constant sirens about air alarms, explosions, alarming information;
- very nervous and depressed state, anxiety due to lack of understanding of the prospect of returning home;
- many have exacerbated chronic diseases;
- epileptic seizures are more common, in some children up to three times more often than before;
- more often hysterical attacks are manifested in children with autism;
- feel isolated, suffer from lack of communication;
- suffer from a lack of useful and favourite things,
- they are afraid to leave the apartment, go to shelter and stay at home during bombings and rocket attacks, their mothers stay with them;
- those who are in shelter experience constant stress from being indoors, inability to participate in classes and rehabilitation, constant stress when moving to shelters.
The war created new barriers for Ukrainians with intellectual disabilities to access the support they need on a daily basis, namely:
- loss of social, rehabilitation, educational, medical services;
- lack of psychological assistance;
- experience due to lack of activity and uncertainty;
- premises for their temporary residence unsuitable for the needs of persons with disabilities;
- limited opportunities or complete impossibility of using bomb shelters;
Restrictions on certain medicines that require a prescription from a psychiatrist;
- restriction of access to psychiatric care;
- inability for people with autism to be in overcrowded bomb shelters;
- often the impossibility of evacuation from combat zones due to exacerbation of behavioral disorders.
Families’ experience during the war
The following problems of Ukrainian families of people with intellectual disabilities were identified:
- they have to choose what to spend their resources on – access to treatment, queues for medicines, products or care for a person with intellectual disabilities who needs constant attention;
- it is not always possible to accompany a person with intellectual disabilities through their own employment, so they are forced to put them at risk when using transport in new conditions;
- fatigue and exhaustion of mothers (often from single-parent families);
- difficulty to find, or complete lack of necessary medicine;
- feelings of fear and increased anxiety due to imminent danger, psychological stress;
- difficulties in meeting basic needs, isolation, inability to obtain all necessary social services;
- many have lost their jobs or their salaries have decreased;
- there is no access to consultations with specialists, barriers to accessing professional advice in case of urgent need;
- it is difficult to draw up documents, especially for those who escaped military shelling, they need help with advocacy;
- families do not have special things to stay in shelters (basic first aid kits, lanterns, sleeping bags, rugs, thermal underwear, power banks, folding chairs, etc.);
- lack of access to the day care program and transport (many of our beneficiaries are from rural areas and they do not have the opportunity to come),
- Frequent air alarms frighten people with intellectual disabilities, and they need extra attention;
- increased psychological tension in families;
- increase in financial costs, expensive costs for the purchase of drugs for both the underlying disease and comorbidities;
- limited treatment.
Problems with the provision of services by NGOs and agencies
Non-governmental and municipal service providers reported the following problems caused by the war and affected Ukrainians with intellectual disabilities and their families:
- Significant arrears of NGOs for rent and utilities, as local NGO support programs are suspended, non-profit status is not allowed to earn, and owners demand payments, and therefore a high risk of losing premises;
- Refugee families live in the premises of some NGOs or agencies, they cannot provide daily services for people with disabilities.
- Programs for the provision of social rehabilitation services in public organizations are not funded.
- A significant obstacle to work was the disruption of transport for day service users to get to the NGO, because sometimes it is dangerous for a person with intellectual disability to move independently in the new, war reality, because they may not respond properly in case of alarm, and not always able to follow it.
- Frequent air attacks and threats of artillery shelling created great tension and extraordinary experiences, curfew in the evening and at night, and sometimes for several days they were not allowed to leave the house, so the local communal rehabilitation centers also stopped providing day care and rehabilitation services.
Additional needs of families caused by the war
- special conditions in places of their movement to meet the special needs of persons with intellectual and complex disabilities;
- access to rehabilitation is absent due to the war or is not available at the new place of temporary residence;
- special conditions of evacuation: professional support, equipment, psychological support to overcome the post-traumatic syndrome;
- social services both for a person with a sole proprietorship (psychological rehabilitation, support, employment or asylum, personal assistant) and for a person caring (consultation, care);
- humanitarian aid to meet basic needs (food, medicine, accompaniment during the walk, hygiene items, safe living);
- training in digital skills (for people with intellectual disabilities, and elderly mothers) to gain access to humanitarian aid;
- material assistance, as prices have risen sharply, and there is no access to free medicines and services (medical, educational, rehabilitation, social);
- special things to make it easier to stay in shelters (blankets, thermoses for food and drinks, power jars, comfortable chairs);
- rehabilitation equipment.
NGO activities to support families, help the army and the population
In most cases, financial support for NGOs was delayed by local and national authorities, and donor assistance was suspended. Thus, in March and April 2022, the main part of the NGO activities mentioned below was carried out on a volunteer basis, namely:
- support for evacuation both within the country and abroad of people with intellectual disabilities and their families, as well as the general population – providing temporary accommodation, food, emergency care, assistance with documents, counseling and psychological support;
- support of the Ukrainian army: camouflage nets;
- transportation, coordination and distribution of humanitarian aid;
- online activities for people with PE: occupational therapy classes, psychological support, workshops;
- volunteer initiatives for them to help NGO members evacuate from combat sites;
- fundraising for families, provision of food, medicine, hygiene items for families and institutions;
- providing families with information about the war through viber groups and FB;
- receive internally displaced persons in NGO premises;
- providing professional services to a multidisciplinary team on a volunteer basis;
- placement of a humanitarian aid center in the premises of NGOs both for NGO members and for the population as a whole.
Expected needs in the next 2-3 months
NGOs expressed their ideas on the needs of families and support for the institutional development of NGOs. Provided that the war can move to a calmer phase, caregivers may be exhausted by the war and will need to regain care capacity before the start of the new school year. Thus, they expressed their views on their future needs in the summer of 2022 (needs are ranked according to priority depending on the number of respondents):
- special funds for the launch of transit houses (for learning independent living skills) and group houses for emergency and planned accommodation of aging mothers, funds needed to purchase premises, their adaptation, promotion of current expenditures from local budgets, professional support of new staff may not know the practical principles of community inclusion);
- financial assistance for psychological rehabilitation courses for people with intellectual disabilities and their care-providers (mostly mothers) so that they can receive temporary assistance;
- costs of rebuilding NGO services (including renovation of premises, purchase of missing equipment, restoration of buildings in case of demolition), costs of covering services, as well as assistance to families and employees to return home;
- costs of providing daily services (supported employment) as soon as the military situation becomes sufficiently secure to cover the costs of rent (including their arrears of rent and utilities) and the remuneration of service personnel;
- support for families wishing to return from places of relocation (transportation, job search or other livelihoods, restoration of destroyed houses);
- temporary rest and rehabilitation of families;
- support of personal assistants and protection of personal assistants by local authorities;
- support for the referral to foster families of those persons with intellectual disabilities who remained abandoned;
- new equipment for the workshop to try to earn money to cover the needs of day care;
- costs of covering access to information, including the purchase of digital equipment and relevant training courses;
- humanitarian aid to families to meet their physiological needs (food, medicine, sanitation and hygiene items);
- purchase of a minibus for the organization transportation of service users.
100 days of war were very difficult, but all 118 teams of public organizations and institutions of care of Ukrainians with intellectual disabilities do not lose optimism and hope for victory. They continue to do everything possible to win and ensure the highest possible quality of life for their relatives and their families.
In those 100 days, we realized that freedom, the right people around you, the opportunity to work peacefully and take care of your family, and many other simple things are so valuable.
Even more valuable is the real solidarity between the families of people with intellectual disabilities from different countries and the real friends who have come to help you in the event of war, even without the need to ask for help. So we are heartily and sincerely grateful to all our friends and partners who came to help us.
Thinking about the future restoration of Ukraine, we will do everything possible to achieve full integration of Ukrainians with intellectual disabilities into each community and society as a whole. That is why we strive to ensure that the following principles are taken into account in all future post-war plans:
Replace institutional-care model with new types of services.
Examples of support and services that need to be developed:
- Resource Center for Children with Disabilities for their inclusion
- Inclusive sports and playgrounds
- Supported accommodation for people with intellectual disabilities
- Transit houses for people with intellectual disabilities
- Agency for supported employment (workshops) for people with intellectual disabilities
- Agency for temporary care of persons with intellectual disabilities and temporary rest of families
along with such institutions to which pre-war Ukraine was accustomed as shops, secondary schools, pharmacies, kindergartens, cafes, etc.
- Rules for the provision of both public and private information (including official websites, FB and Instagram pages, Telegram channels, etc. should include the provision of easy-to-read information).
- All civil servants and employees of municipal and private services and institutions must be provided with procedures to communicate with citizens with intellectual disabilities in plain language.
- Satisfactory quota of civil servants and employees of public and private services, specialists in health and social services, educators, police, courts, public transport, employees of cultural and sports institutions and other persons working in person – the format for communication with people has be taught to communicate with children and adults with intellectual disabilities using clear language.
- Special inclusive procedures with the use of plain language, psychological support should be provided in the work of those services, institutions and agencies where decisions are made on basic life issues, such as the judiciary, social work services, employment services, medical services, etc.
- Decision-making processes for approving plans for the post-war reconstruction of Ukraine must include special procedures for close consultations with Ukrainians with intellectual disabilities on special procedures using plain language and the support of relevant specialists.
The Coalition would be very grateful if our international friends, partners and supporters would incorporate these principles into any discussions on the future of Ukraine and invite them to their governments to take all relevant decisions on the basis of inclusive participation among all Ukrainians, including those often neglected and ignored.
The coalition is asking for help again. We need your support as never before. The Ukrainian economy is ruined, military needs have pushed the needs of individuals with intellectual disabilities to the background. Naturally, Ukrainians live in constant danger to their lives due to continuous military shelling throughout Ukraine, regardless of their whereabouts. Their rights, which are violated both in practice and in law (even the Constitution of Ukraine), are neglected, the quality of life has significantly decreased. Therefore, the Coalition should continue its role of representing the rights of individuals with individual entrepreneurs and broadcasting their needs in society.
The general vision of the most pressing needs of the war that need our support is as follows:
- support of supported living initiatives instead of institutional care, many mothers have lost the ability to provide care, help us stop the new flow of Ukrainians with intellectual disabilities to boarding schools;
- support for families to continue caring for individuals with intellectual disabilities;
- support for non-governmental organizations and municipal services that provide day care services and involvement of individuals with intellectual disabilities in the community.
Of particular concern are the families of people with intellectual disabilities and non-governmental organizations from those settlements that have become famous all over the world due to the fact that their residents have nowhere to return – such as the residents of Mariupol. They need special attention and significant support to relocate and completely reset life in a new place.
[This is an automated translation from Ukrainian of a report published by the VGO Coalition on 4 June. It was edited for clarity and space.]
Our work brings the voice of people with intellectual disabilities and their families where decisions about their future are made.
This has always been incredibly important. It is even more so with the Covid pandemic drastic impact on their rights and lives.
Being visible and vocal on issues directly affecting millions of people requires your support.
Become Inclusion Europe supporter and help us keep doing our work.