This document discusses services and support for children with disabilities and their families in Europe. It outlines several key principles: 1) Protection of children's rights is a priority, and states should support families to meet children's needs. 2) Institutional care should only be used as a last resort, as evidence shows it is not effective and violates children's rights. 3) Successful models emphasize developing community-based, family-focused services across sectors like health, education, and social welfare. Early intervention, parental support, and inclusion in community life are emphasized.

1. Realizing article 19 and 23 of the CRPD -
What is the way to meet the needs of children
with disabilities and their families?
Dainius Puras
Vilnius university

2. European experience in supporting children
and families at risk – basic principles (I)
• Protection and promotion of human rights of all
children is a priority. State should support
families so that they could effectively meet all
needs of children
• Political will: Community based and family
focused services need to be developed and
strengthened, with all relevant sectors involved
• Institutional care is the last resort. Huge amount
of evidence that institutional care is not (cost)-
effective and violates human rights of children.

3. European experience in supporting children
and families at risk (II)
• Child protection services
• Child mental health services (Child and
adolescent psychiatry)
• Child guidance clinics
• Parent training – improving parenting skills
• Special programs for mentally ill parents
• Early intervention services
• Developmental pediatrics
• Preventive programs targeted at children and
families at risk

4. Acceleration of the process of positive
change in the CEE/CA region
• Reporting on the CRC and CRPD to the UN Committees
• WHO Declaration on Health of Children and Young
People with Intellectual Disabilities and their Families
(Bucharest, 2010)
• Ministerial conference in Sofia, Bulgaria, November
2012
• First success stories of successful transition (Bulgaria,
Georgia, Serbia and other countries)
• Protection of rights of children with disabilities remains
the most serious challenge for systemic change in the
CEE/CA region

5. WHO European Declaration in Health of Children
and Young People with Intellectual Disabilities and
their Families
Endorsed by Ministerial representatives of countries in WHO European
region (including Central Asian countries) in Bucharest in November 2010
PRIORITIES FOR ACTION
• 1.Protect children and young people with intellectual disabilities from harm and abuse
• 2.Enable children and young people to grow up in a family environment
• 3.Transfer care from institutions to the community
• 4.Identify the needs of each child and young person
• 5.Ensure that good quality mental and physical health care is coordinated and
sustained
• 6.Safeguard the health and well-being of family carers
• 7.Empower children and young people with intellectual disabilities to contribute to
decision-making about their lives
• 8.Build workforce capacity and commitment
• 9.Collect essential information about needs and services and assure service quality
• 10. Invest to provide equal opportunities and achieve the best outcomes

6. Accumulation of best practices in the region
• Development of early intervention services for children from 0 to 3
by replacing a medicalized approach
• A team of medical and other professionals work in partnership with
parents so that abilities and skills of child in all areas of his/her
development are strengthened.
• Rich experience in introducing modern practices of modern special
education and replacing outdated principles and practices of
defectology
• Introducing modern approaches in social services that provide social
support interventions to families
• There is a need of sustainable support of these modern approaches
so that they are not an exception, but a rule in the general system of
services

7. Best practices: Development of support
services for families of children with
disabilities
• Parents who have a child with disability need to
receive professional support
• Social work as a profession of crucial importance
• Nurses who work in primary healthcare could be
a part of emerging family support services
• Financial support for families is important, but
this is not sufficient - support services are
needed
• Support for development and activities of groups
and organizations of parents

8. Complexity of changes in Central/Eastern
Europe and Central Asia
• Over 20 years of transition with different success
• Still heavy burden of institutionalization of
children with and without disabilities
• Lack of family-friendly supportive interventions
for families at risk and families who have
children at risk
• Gap in healthcare systems – lack of effective
psychosocial services and developmental
pediatrics
• Poor involvement of interested citizens, such as
parents

9. Development of services for children with
developmental disabilities in Lithuania
• Strong coalition of reform-minded professionals and
national parents’ organization – “Viltis” (“Hope”),
founded in 1989.
• Complementing traditional medical model with social
and educational model
• Training a new generation of professionals, including
social workers
• Humanizing healthcare services and adding psychosocial
and developmental component to pediatric services
• Supporting of parents’ movement and enabling parents to
become equal partners with professionals and authorities.
Parents’ organization was a driving force of positive
changes

10. Mental disability and other developmental disabilities:
model of services through life span
This model was developed by Vilnius university Child Development Center, and is
now in the process of implementation throughout Lithuania
Age: from 0 to 3(5) years
Community-based early intervention services for children with or at risk of developmental
disabilities - part of healthcare system; close cooperation with social (child protection and
family support) services
Age: school age (from 5 to 18-21 years)
System of education is responsible for education of all children with disabilities; medical
specialists serve as consultants when needed; close cooperation with social (child protection
and family support) services
Age: adulthood (over 18-21 years)
Adults with developmental disabilities are integrated in the life of their communities by
providing supported housing (group-homes), vocational and occupational services
Residential institutions for children and adults with developmental disabilities – only in
exceptional complex cases

11. Development of services for children with
developmental disabilities in Lithuania:
achievements and challenges
• Many children with moderate and severe disabilities live with loving
parents and enjoy basic rights, including education
• 40 early intervention services (outpatient teams) for children with
disabilities (0-4 years of age) in healthcare system; University Child
Development Center – for complex cases, teaching and research
• Many children with mild disabilities – in general schools, many
children with severe disabilities – in special schools
• Family support services – slow development
• Summer camps for children and parents - as successful example of
innovations
• Independent living group homes and vocational/occupational
services for young adults – still not enough to replace fully system of
remote residential institutions

12. Importance of early childhood
• The best time for investing effectively in quality of
childhood and parenting is 0 to 3 years of age
• This is the best time for managing developmental,
emotional and psychosocial problems
• The “meeting point” for professionals in pediatrics,
psychology, child neurology and psychiatry, social work,
education, special education, etc.
• Prevention and elimination of institutional placement of
children from 0 to 3 years of age is a priority task for the
CEE/CA region
• All these principles equally apply for children without
and with disabilities

13. Analysis of obstacles and challenges
• Systemic gaps within health, social welfare and education sectors
• Poor /unequal distribution of services - need to balance between
advantages of centralization and decentralisation
• Lack of efforts for reaching the most vulnerable (outreach
services)
• Poor inter-sectorial cooperation
• Traditions of excessive medicalization and focus on “cure” are
still strong
• Stigmatizing attitudes from society and professionals and society
• Poor involvement of resources existing in communities and
families
• Old-fashioned practices still in place: parents are moralized,
poverty used as argument for institutional placement; poor
management of individual cases; lack of culture of evaluation
(processes and not outcomes usually evaluated)

14. Components of successful implementation of
CRPD and CRC (I)
• Political will to invest in evidence-based and human
rights – based policies and services
• Independent monitoring
• Mobilization of all majors stakeholders is needed for
implementation of:
General principles of the CRC (art. 2, 3, 6, 12)
General measures of implementation of the CRC
(legislation, data collection, independent monitoring,
cooperation with civil society, allocation of resources)
Main principles of the CRPD, including the right to live
in family, community and open society

15. Components of successful implementation of
CRPD and CRC(II)
• Shift of paradigm:
From policies and practices based on
• social exclusion, medical model, institutional
placement of children with disabilities
To policies and practices based on
• Social model, social inclusion, empowerment of
families and children, developing family-focused
and community based services

16. We need to always keep in mind that
The barrier is not the disability
itself but rather a combination of
social, cultural, attitudinal and
physical obstacles that children with
disabilities and their families
encounter in their daily lives.