Thematic Groups Concept

UNICEF UKRAINE

TERMS OF REFERENCE

International Consultancyfor Assessmentof

theEarly InterventionServices[1]in Ukraine

Country: Ukraine

Assessed period: January2010 – July 2014 & January 2002 –December 2006

Duration of assessment: 34 days, November– December2014

1.Background and Context

Of over 8 million children living in Ukraine, 167,000 children are registered with disabilities, with more than 40,000 of these children living in institutions. Of those children with disabilities[2], it is estimated that in 2012 there were more than 12,000 children under 3 years with disabilities (83.2 per 10,000 child population of 0-3 years of age) and more than 33,000 children between 3-6 years (179.6 per 10,000 child population of 3-6 years of age).[3] There is strong stigma and discrimination against children with disability and hence inclusion of children with disabilities in the society and their right to access essential services in healthcare, schooling and social support for them and their families are yet to be realized. Eliminating the placement of children in institutions has not yet clearly become a regular practice regarding support and care for children with disabilities, as medical professionals still advise parents with children having more severe disabilities to place them into institutional carefrom birth. Furthermore, parents of children with disabilities have limited knowledge about options available or on the advantages of keeping the children at home, and there is lack of mechanisms and comprehensive services to support families with children with disabilities.

At the same time, early intervention services have been developing in Ukraine for more than 10 years. NGO partners from Lviv and Kharkiv have developed their services based on international early intervention standards, leading the development of early intervention approaches among other colleagues from different agencies (including NGOs, baby homes, and rehabilitation service centers). These initiatives are now at a stage where their experiences could be disseminated to a national level to enhance early intervention responses throughout Ukraine. UNICEF’s strategy to assess the impacts and cost the work of organizations conducting such services assumes that establishing a Ukrainian evidence-platform for early intervention will serve as the tipping factor for taking the approach to scale.

This process requires a more systematic analysis, which can provide insight into the effectiveness of the services, approaches, or strategies as well as the outcome or impact that the services are contributing to with regards to children and families. Findings from this research will become the factual basis for policy advocacy, as well as for future expansion and enhancement of early intervention services in Ukraine. Furthermore, political commitment for this process exists, with the priority expressed by the government on 27 February 2013 at a Cabinet of Ministers meeting within the presidential social initiativesto enhance rehabilitation services for children with disabilities,modelling services such as those in Kharkiv.

Children with disabilitiesare a key focus for UNICEF’s equity response[4]. In UNICEF Ukraine’sCountry Programme 2012-2016,there is a commitment expressed to strive towards a 25% decrease in the number of children in institutions due to disability or development delays. UNICEF believes that interventions at the earliest age for children with disabilities or at risk of disabilities have the largest impact, providing a strong foundation for children and their families to address the needs of children with disabilities and be more socially included. A theory of change document on early intervention has been drafted by the UNICEF-Ukraine office and is attached to this Terms of Reference. Research findings will also establish a knowledge base for UNICEF’s equity focused evaluation[5] scheduled at the end of its country programme in 2016.

1. The Programmes to be assessed

In this research, “early intervention,” is meant as a system of coordinated services that promotes the child's age-appropriate growth and development and supports families during the critical early years (from birth to 6 years). The age for intervention can vary from 0-3 years to 6 years, but a critical part is starting intervention early and before 3 years. Development of these services sometimes has been targeted to children with developmental disabilities or delays, but early intervention is not limited to children with these disabilities or delays. Early intervention services often address needs of young children who have been victims of, or who are at high risk for child abuse and/or neglect, or where the child or family faces other issues to enabling development growth (e.g. poverty, families facing dependencies, pre-mature birth etc.).

Key principles of early intervention, which are found in the different programmes to be assessed, are having: (1) a family-centred approach; (2) coordination of services, using a multidisciplinary team of specialists; and (3) individualized interventions, which are accessible and provided on a regular (continual) basis.

Early intervention services have been extensively developed in Kharkiv’s Institute of Early Intervention as well as Lviv’sDzherelo NGOs. Both organizations are NGOs with greater flexibility in structuring. In Kharkiv, early intervention approaches have been disseminated to other institutions building capacities to enhance access of more inclusive medico-social services for families.

In addition to the assessment of the two NGO services, the research should analyse how early intervention principles have been incorporated into other state agencies and the capacities to build on these initiatives to make early intervention principled services more accessible. For the baseline of the assessment, the assessment will also cover state residential institutions for children with disabilities or developmental delays.

In this context, assessment will be three-fold:

(1)Assessment of the work of Kharkiv/Lviv NGOs work over the last 5 years and whether outputs and programme activities are leading to expected outcomes;

(2)Assessment of the “pathway” of children (now adolescents/ adults) and their families who worked with Kharkiv/Lviv NGOs in early intervention services;

(3)Assessment of state agencies that provide medical and social/rehabilitative support to young children with disabilities; and

(4)Analysis of whether the early intervention models in Kharkiv and Lviv substantiate UNICEF Ukraine’s theory of change (hypothesis, assumptions, linkages and expected outcomes)on early intervention with evidence of envisaged change.

Organisations to be assessed:

1). Kharkiv:Institute of Early Intervention

Established: 2000

Main objectives of the services:

• Provide assistance with both a child’s cognitive and developmental delays, as well as support advancement of self-help and social skills during a child’s early years;
• Family-oriented support for families and children with disabilities and/ordevelopmentaldelays orhealth impairments by interdisciplinary teams.

Early Intervention Team:

Director; psychologist, speech therapist; physical therapist; coordinator.

Age Group: 0-4 years

Geographical Coverage: Involves day services for families from the city of Kharkiv

Strategy:

The services of Institute of Early Intervention has the parents as key partners in providing psychological and pedagogical support to young children with disabilities and/ordevelopmental delays– focused on rehabilitation and abilitation of children while normalizing lifestyles for familiesand working toward social integration and inclusion

Project Interventions:

• Development evaluations of children
• Monitoring of children’s development
• Case management approach to services: profile of the child’s development and an individual plan with involvement of family members, realizing the plan through individual and group therapy
• Home visits
• Counselling for family members; informational support for parents; parent clubs
• Play therapy, involving caregivers in the process
• Provision of crisis groups that counsel parents in maternity wards
• Accompaniment of children to transition from early intervention programme in pre-school to other development programmes

Key Stakeholders:

The end beneficiaries are children with disabilities, development delays or risks of disability,and their families.

Other partner organizations in Kharkiv applying components of early intervention:

(1)Children’s Polyclinics #2 and #14: EI service since 2012

(2) Kharkiv Oblast Baby Home #1: EI service since 2007

Objective: Accompany children with disabilities and their families to provide support and multi-profile rehabilitation.

Age group: 0 up to 4 years

Provide support to children with:

• Nervous system impairments (neurological impairments)
• Congenital disorders (abnormalities of structure, function, or body metabolism that are present at birth)
• Genetic disorders with psycho-physical delays/disorders
• Children with autistic spectrum disorder

Intervention Components:

• Medical diagnosis (EKG, ultrasounds, etc.)
• Medical monitoring
• Correctional/ rehabilitation therapy
• Medical treatment for convulsive disorders (Institution is licensed to provide medical treatment)
• Services for medical rehabilitation
• Psychological-pedagogical rehabilitation

2). Lviv: “Dzherelo” Rehabilitation Center

Established: 1993, as a grassroots association.

Early intervention services - since 2002.

Since 2008, part of the Center is a communal organization (Lviv City Rehabilitation Center).

Main objectives of the services:

• Provide a complex of services to families with young children with disability, health problem or risk of developmental disorders, focused on early identification, treatment and preventionof disorders in child’s development and of issues in a family.
• Further overall development of children with disabilities, their self-fulfilment and full social integration by providing - in close cooperation with the family - integrated rehabilitation to children and ensuring child’s full participation in the society.

Early Intervention Team:

Paediatrician, child neurologist, speech therapist, physical therapist, psychologist, psychotherapist, medical registrar.

Age Group: 0-5 years

Geographical Coverage:Lviv and Lviv Oblast, as well as all Western Ukraine

Strategy:Like IEI in Kharkiv, Dzherelo’s services have parents as key partners in providing psychological and pedagogical support to young children with disabilities and/ordevelopmental delays – focused on rehabilitation and abilitation of children while normalizing lifestyles for families and working toward social integration and inclusion. At the same time, Dzherelo’s work extends to support children with or at risk of disabilities and their families throughout the life cycle (schooling, integration, support with work opportunities etc.)

Project Interventions:

-Development evaluation of children (motor, psychological, speech, and social development).

-Identification of key issues and goals of EI.

-Integrated individual rehabilitation program.

-Family support, incl. psychological.

-Feeding therapy.

-Consultations on social and legal issues.

-Peer support family group meetings.

-Referral to other specialists.

-Hydrotherapy.

-Kindergarten.

-Social accompaniment.

Key Stakeholders:

The end beneficiaries are children with disabilities, development delays or risks of disability and their families.

Partner organizations in Lviv:

Lviv city children polyclinics; Lviv Genetics Center; Departments of Intensive Care for Newborns.

3). State institution: Specialized Baby Home focused on children with disabilities(concrete baby home tobe chosen after agreement with the Ministry of Health).

Specialized baby home is an institution for medical and social care for orphan children and children deprived of parental care, with physical or mental disorders (III to V groups of health) aged 0 to 4 years, as well as children:

• with organic lesions of the nervous system and mental impairments;
• with organic lesion of the central nervous system, incl. cerebral palsy without mental impairments;
• with dysfunction of the musculoskeletal system and other disorders in physical development, without mental impairments;
• with hearing and speech impairments;
• with vision impairments;
• TB- and HIV-infected children.

4). State institution: Social Rehabilitation Center for Children with Disabilities

Social Rehabilitation Center for Children with Disabilities is a rehabilitation facility for children with disabilities under the Ministry of Social Policy and social protection authorities. It provides rehabilitation services aimed at correcting disorders and/or impairments of and developing children with disabilities, teaching them core social and personal skills, and establishing conditions for their integration into society. It also provides training to parents of children with disabilities for their follow-up rehabilitation in family environment after the service has been provided at the center. Some of these rehabilitation centers have already established specialised “mother and child” sections that focus on rehabilitation work with young children (and in some cased, depending on the center management the age level has been reduced to 6 months rather than 2 years).

1. Rationale

Early intervention services have been developing in Ukraine for more than 10 years. NGO partners from Lviv and Kharkiv have developed their services based on international early intervention standards, collaborating with European (e.g. Holland), North American (e.g. Canada, US) and Australian colleagues, as well as partners from St. Petersburg’s Institute of Early Intervention. These NGO partners have led development of early intervention approaches among other colleagues from different agencies (including NGOs, baby homes, and rehabilitation service centers). Through these efforts, there is an “informal” early intervention network from more than 10 regions of Ukraine’s 27. In 2013, UNICEF conducted a mapping of existing early intervention practices, which revealed a growing movement of state and NGO colleagues applying portions of early intervention practices.

These initiatives are now at a stage where their experiences could be disseminated to a national level to enhance early intervention responses throughout Ukraine. UNICEF’s strategy to evaluate the impacts and cost the work of organizations conducting such services assumes that establishing a Ukrainian evidence-platform for early intervention will serve as the tipping factor for taking the approach to scale. As lack of information affects the government’s ability to design appropriate services and measures for children with disabilities and their families both on a normative level (including finance, standards, guidelines, and protocols) and on a service delivery level, there is a need to document and assess the results of the model services along with evidence of outcomes.

Assessment is undertaken when the government is increasingly interested in ensuring and enhancing services to children with disabilities and their families. Ukraine has politically made a commitment to move from institutional care to family-based care, including for children with disabilities. The government called for transformation of baby homes by 2017 (Order of the Ministry of Health #70 of 02.02.2010 On Activities to Develop Baby Homes). In addition, a presidential order was made in 2013 to enhance rehabilitation services for children with disabilities modeling services such as those in Kharkiv.

It is expected that the assessment results will reveal the extent to which the early intervention services are contributing to: reduction of young children (0-4 years) entering or staying in residential care (baby homes); increase in the health/ development abilities of young children with disabilities; and increase in the capacities of these children’s families to manage their children’s needs.

It is also expected that the assessment results will provide understanding about the ability for early intervention services to be replicated throughout Ukraine.[6] Government ownership in the expansion and incorporation of early intervention practices and transformation of baby homes is crucial for national scale up. Throughout the process, there will be documentation on implementation of early intervention approaches with agreement by the national state partners.

1. Objectives

The objectives of the formativeassessmentare as follows:

1. To analyse whether outputs and activities within the project are leading to expected outcomes and goal of the project;
2. To assess and analyse the bottlenecks and barriers, including policies, practices and other structural barriers in service model implementation;
3. To document lessons learned and good practices of the service model activities, along with evidence of outcomes;
4. To demonstrate, based on evidence, whether or not a nation-wide scale up of the service model approach and practice is possible and whether a scale up will effectively lead to closing of equity gaps in the area of work;
5. To assess the validity of UNICEF Ukraine’s theory of change on early intervention and revise the theory of change according to the findings; and
6. To develop strategic, policy and implementation recommendations of how the on-going service model, if achieved its key outcomes, will be efficient and sustainable in future, thus informing policy development and framework of the national scale-up of the pilot.

End-Users of AssessmentFindings:

The primary user of the research findings are the Ministry of Health, the Ministry of Social Policy, the Ministry of Education, Kharkiv and Lviv local authorities, partner NGOs implementing the early intervention services in Lviv and Kharkiv, UNICEF, and local organizations involved in the development of policies and services related to young children with disabilities and families.

It is expected that the assessmentresults will help the primary users, such as national and regional authorities as duty bearers, to inform the way forward in the enhancement and national scale up of the service model of early intervention services for children with disability. It will help to identify, based on evidence, what the essential steps, strategies, and environment are in order to achieve the intended results. NGOs providing various services for vulnerable groups such as children with disabilities will use the results of assessmentas advocacy instrument for expansion of the service model in the country as well as to adjust or enhance the services and approaches, based on the findings. UNICEF will also use findingsfor evidence-based advocacy and to provide evidence to the donor community for the effectiveness of investment. All stakeholders are expected to use the findings, conclusions and recommendations to further develop policy and framework to achieve positive impact for children and women, in particular children with disabilities and their families.

1. Scope

The assessment will comprise two approaches:

1). Review and analysis of the early intervention services in comparison to conventional medical approach services provided in state care institutions.

2). Assessment of children and families who received early intervention services in 2002-2005 in ‘Dzherelo’ Rehabilitation Center or the Institute of Early Intervention, their health, participation in education, social inclusion, relations inside the family, quality of life, in comparison to children who resided and received services in state care institutions in 2002-2005.