Six organizations working to protect the rights of persons with disabilities have launched a joint initiative to collect information about cases in which people were denied access to social services in local communities.
The initiative is being implemented by The League of the Strong, the Network of Parent Organizations, See with the Heart, the Active Rehabilitation Group, the Coalition for the Protection of the Rights of Persons with Intellectual Disabilities, and the Kharkiv Regional Foundation “Public Alternative.”
Why Are We Collecting This Information?
One of the key reasons behind this initiative is the story of a family from Zhytomyr.
Zhanna Zarichna is the sole caregiver for her 20-year-old son, Ivan, who has autism spectrum disorder and severe intellectual disabilities and requires continuous support. There are currently no social services available in their city that could partially assume responsibility for supporting an adult with disabilities. Despite repeated requests for assistance, the family has not received the support they need.
Recently, Zhanna underwent complex spinal surgery and is now facing a lengthy rehabilitation process. Due to her health condition, she is unable to work or provide full-time care for her son, yet she still has no access to the social services her family requires.
“For 20 years, I have not received any meaningful support in my community. Everything that was provided seemed designed for reporting purposes, inspections, and paperwork rather than real assistance. As a result, I have developed a disability myself and have already undergone three spinal surgeries. I am no longer able to fully care for my son, and I can barely take care of myself.
This is the result of two decades of inaction by the Zhytomyr City Council and its Department of Social Policy. I started seeking support when Ivan was only two years old. He was denied access to kindergarten, denied access to school, and even experienced violence while receiving social services, forcing me to remove him from the program.
My greatest wish is for this situation to change — not only for us but for other families as well. Most parents are afraid to do what I have been doing for years. I continue this fight with the little strength I have left.”
What Can Be Done?
The participating organizations believe that cases like Zhanna’s may be widespread but often remain invisible to the public and policymakers. Nearly two years ago, when members of the Network of Parent Organizations first began connecting with one another, they were deeply affected by the story of Zhanna and her son Ivan.
“At that time, Ivan, who has autism and severe intellectual disabilities, had already turned eighteen. Yet he was still unable to access appropriate social services and continued to face discrimination in many areas of life. At the same time, we were inspired by Zhanna’s resilience. Despite serious health challenges, she continued to advocate tirelessly for her son’s rights at both local and national levels.
We understood that their story was not unique. In fact, it could happen to any family in our community. The experience affected us so deeply that we decided to dedicate our efforts to changing the system used to assess eligibility for social services.
This advocacy work is grounded in a simple principle: a person is not merely the sum of assessment scores. The support and services available to children and adults with disabilities should not depend solely on whether they fit into a particular category according to a standardized assessment.
Social services are a basic necessity that should be available in every community and provided according to each person’s actual needs.
We firmly believe that the system must recognize the individual, their dignity, and their rights — not just the numbers recorded in reports”, — Anna Derii, Communications Officer at the Network of Parent Organizations and Chair of the Board of the Poltava Down Syndrome NGO
“The League of the Strong has been working systematically on issues related to social services and accessibility in Ukraine. We have previously analyzed legislative barriers that hinder the development of social services and the implementation of deinstitutionalization reforms. At the same time, we see that the challenge is not limited to legislation. There is a significant gap between what exists on paper and how the system functions in practice”, — Ihor Bevkh, Legal Advisor and Analyst, The League of the Strong.
Stories such as Zhanna’s help reveal this gap by demonstrating why services remain inaccessible, why people are denied support, and where the system fails to function as intended.
The case became a catalyst for cooperation among civil society organizations. The family sought assistance from organizations including See with the Heart and the Network of Parent Organizations, which then approached The League of the Strong to strengthen advocacy efforts.
“We view this data collection effort as a tool for building an evidence base that can be used to influence policy decisions and, where necessary, support strategic litigation”, — Ihor Bevkh, Legal Advisor and Analyst, The League of the Strong.
The League of the Strong initiated this joint effort and proposed a collaborative mechanism for documenting such cases. The goal is not only to record problems but also to advocate systematically for solutions.
Together, the participating organizations are collecting testimonies from persons with disabilities and their family members who have experienced denial of services or have been unable to access the support they need.
The information gathered will be used to support advocacy efforts, develop systemic policy recommendations, and — with the consent of respondents — potentially provide legal representation in court proceedings. We encourage anyone who has experienced a denial of social services to report their case through the online survey.
Survey link: https://forms.gle/F3MpsQRgkQSB8PPs8
The survey will remain open online, and the findings will be used to develop a joint advocacy agenda and support engagement with government authorities.