Social Inclusion of Children with Disabilities – Russian Federation Joanna Rogers, UNICEF September 2011

Children with disabilities are over- represented in residential care Children with disabilities represent around 1.5% of the child population And around 44% of the child population in residential care

Around 34% of children with disabilities are in residential care

Children with disabilities are not being impacted by child welfare reforms as much as other children

Planning requires policy goals ‘Normalisation’ of the life of a child with disabilities at home, at school, in the community Enablement (habilitation) – physical, mental, communicative, occupational … Inclusive education near the home Empowerment – child and family Social support Social protection – employment of parents, benefits Working towards independent living – further education, employment, supported community based living

Planning for Social Support Systems Assumption – parents are the main carers of children with disabilities Assessment – how many children, where, what needs? How are needs changing with age? What needs by age, by disability, by location? Needs of parents? Needs of siblings? Multi-disciplinary and cross-sectoral: Transport, Housing, Accessibility, Leisure, Abilitation (enablement), Health, Education, Social, Individual/emotional

Principles for working with individual children and families Assessment is key – preferably a single (common) assessment accessible by a range of professionals Partnership – with parents, children, siblings Multi-disciplinary and inter-sectoral – but with one coordinating professional Flexibility – support packages that are sensitive to individual needs and changing needs Sensitivity – to individual needs of specific children and parents – listening to children and parents when planning and reviewing support packages Outreach – centre-based services can only form part of a package of services

Social services being developed in the Russian Federation Early intervention community based rehabilitation including multi- disciplinary approach to addressing a range of issues: abilitation (ergotherapy, physiotherapy, speech therapy) social worker support, income maximisation, housing, accessibility, parent groups parent training/skills enhancement (eg Portage) Respite care (short breaks care)

Successes PMPK in Tomsk supporting children from assessment through to further education Respite care (short breaks) model Early intervention well established in some regions and growing professional network Abilitation rather than rehabilitation in some regions Social model gaining currency Movement for inclusive education Precedent of foster care for children with disabilities Precedent of carer allowances Extensive network of disability focused child and family support centres (social rehabilitation centres)

Challenges Child welfare reforms still not systemic in reaching children with disabilities Ensuring that social support is integrated with other services and not parallel or ‘stand-alone’ Recognising that inclusive education cannot work without adequate support for parents in the home, adequate transport, accessible leisure activities and vice versa Access to contemporary technical aids for enablement Social protection that empowers a family to help themselves and not only survive, but thrive - employment Institutionalisation still a first response in many regions Ongoing need to change attitudes – among professionals and wider society. Medical model still predominates