Institute of Global Health Innovation

Our third blog post for the two-year anniversary of the invasion of Ukraine addresses the importance of prioritising better care for children with complex long-term health needs.

This is part of a series of blog posts sharing insights from our Ukraine Health Summit, hosted in partnership with the British Red Cross to further efforts in supporting the delivery and restoration of health services in Ukraine. This piece is written by Alexandra Shaw, Institute of Global Health Innovation, Imperial College London, with colleagues.

In Ukraine, many children continue to be cared for in institutions. Estimates vary widely and suggest that between 90,000-200,000 children reside in these institutions, and approximately 20,000-50,000 of them have disabilities.^{1 2}

Children have a range of disabilities including congenital abnormalities of the nervous and cardiovascular systems, foetal alcohol spectrum disorders, genetic disorders and chromosomal abnormalities, visual impairments, cerebral palsy and epilepsy.³  Factors impacting institutionalisation include poor infrastructure for children with disabilities, including education and community-based therapy services. There is a lack of crucial services, including rehabilitation and palliative care, and support in the community, making caring for a child with complex health needs even more challenging. Social challenges also drive institutionalisation including poverty, social stigma and the lack of support means families are left isolated.³ An estimated 90% of children placed in institutions have parents or family but are placed in institutions because of the challenges of caring for them in the community. Other factors include the inability of parents to care for their children, neglect or substance abuse.²   

Impact of institutionalisation 

In 2019, the 74th UN General Assembly adopted the resolution on ‘Rights of the child’ which urges that family and community-based care should be promoted over placement in institutions, and that children with disabilities should enjoy all human rights and fundamental freedoms on an equal basis with other children, including access to a family life.4 Children living in institutional environments can suffer significant harm including the impact on their quality of life, their ability to adapt to society, mental health and overall development.5 Facilities often fail to meet basic needs, address individual requirements and provide emotional and social stimulation.

Institutionalisation can lead to poor physical and mental health outcomes, stunting and a lack of development from inadequate nutrition, and infectious disease. Children who have been institutionalised can be left with difficulties processing and integrating sensory information, poor language development, damaging behaviours and significantly shortened life expectancy.6 Staff to child ratios are often inadequate, leading to inappropriate methods of restraint, and a lack of supervision means children are not provided with adequate sanitary care, or assistance with feeding.²

Reform and impact of war

Before the war, the government had adopted the National Strategy on Reform of the Institutional Care System (2017-2026), however there have been delays in implementation and children with disabilities have been excluded included in these reforms.7 The war has made the situation for children with complex long-term health needs even more desperate. Whilst children with more mild disabilities are being evacuated, many children have been moved from facilities in the east of Ukraine to inadequate facilities in the west. This had led to overcrowding, further reduced staff ratios, and a lack of medical records leaving staff looking after children with no background information about their condition and care needs.8

In some cases, children have been returned to their families without support or guidance to ensure the child’s health needs are adequately met.¹ The European Commission has provided 230 million in humanitarian aid to the Ukrainian government which brings an opportunity to ensure disabled children benefit from the assistance provided to Ukraine.⁹

Moving forward 

There is still progress to be made to improve care for children with complex health needs in Ukraine. A unified approach is required which clearly defines the responsibilities and powers of government authorities and local organisations to apply standards to protect children’s rights and care. Key recommendations include:

     1. Reform for the provision of community based care 

• Change of policy and legislation, alongside political commitment, to prevent future institutionalisation and protect the rights of children, particularly those with disabilities.   
• Implement programmes to develop long-term family-based environments for children currently living in institutions. 
• Develop services to support children and families in the community including early intervention, social care support systems, family-based care, rehabilitation services, social services and paediatric palliative care. 
• Enable a holistic approach to care for children with complex health needs, including the role of education, sport, family and culture. 

     2. Paradigm and cultural change campaign 

• Launch a comprehensive and sustained campaign to enable a shift in attitudes and paradigms across all professions and the workforce. 
• Implement policy and a public campaign to encourage a societal shift in the way children with complex long-term health needs are viewed. 
• Enable the empowerment of families to advocate for their own children and specialist needs. 

      3. Development of health and social care workforce  

• Implement educational programmes to increase the size of the workforce in the areas of medical rehabilitation services, paediatric palliative care and social services. 
• Upskill professionals and expand access to continuing development for staff working across paediatric health and social care. 
• Develop capability in the community for family members, carers, social workers, rehabilitation staff, and other allied professionals such as speech and language therapists to support children in the community. 

     4. Strategic allocation of reconstruction funding 

• Develop a strategic plan to guide the allocation of reconstruction and support funding for children to be cared for outside of institutions.  
• Enable collaboration across different ministries which oversee education, social care and health to bring a more unified effort towards reducing the number of children living in institutions. 
• Prevent the reconstruction and rebuilding of institutions and instead invest in foster care, family and community-based services. 

 

References 

1. Ukraine war response: Children with disabilities. UNICEF; 2022 (https://www.unicef.org/emergencies/ukraine-war-response-children-disabilities, accessed 18 February 2024).
2. No Way Home: The exploitation and abuse of children in Ukraine’s orphanages. Disability Rights International; 2015.  (https://www.driadvocacy.org/reports/no-way-home-exploitation-and-abuse-children-ukraines-orphanages, accessed 18 February 2024).
3. Behind the mask of care: A report based on the results of the situation analysis of baby homes in Ukraine. Hope and Homes for Children, USAID, UK Aid; 2020.  (https://www.hopeandhomes.org/publications/a-report-based-on-the-results-of-the-situation-analysis-of-baby-homes-in-ukraine/, accessed 18 February 2024).
4. Rights of the child: resolution adopted by the General Assembly. 74th UN General Assembly; 2019: United Nations.
5. Slozanska H, Horishna N. Functioning of boarding schools negative impact on pupils. Social work and education. 2021;8:18-41.
6. Huseynli A. Implementation of deinstitutionalization of child care institutions in post-soviet countries: The case of Azerbaijan. Child Abuse Negl. 2018;76:160-72.
7. Rosenthal E, Kurylo H, Ciric Milovanovic D, Ahern L, Rodriguez P. Protection and safety of children and disabilities in the residential institutions of war-torn Ukraine: The UN Guidelines on Deinstitutionalization and the role of International Donors. International Journal of Disability and Social Justice. 2022;2(2).
8. In Ukraine, children with disabilities live in horrific conditions. Handicap International; 2022 (https://www.hi.org/en/in-ukraine–children-with-disabilities-live-in-horrific-conditions#:~:text=The%20situation%20of%20disabled%20children,risk%20of, accessed 18 February 2024).
9. The forgotten victims of the war against Ukraine: European Network on Independent Living; 2022 (https://enil.eu/the-forgotten-victims-of-the-war-against-ukraine/, accessed 19 February 2024).