Promoting Rights and Community Living for Children with Psychosocial Disabilities Natalie Drew World Health Organization Zero Project Conference 2015 Independent living and political participation: innovative policies and practices for persons with disabilities

Impact of Institutionalization  Mental health impact  Attachment disorders  Depression  Anxiety  Physical health impact  Malnourishment  Limb atrophy  Pneumonia  High death rates  Famine  Physical deterioration  infections  Freezing to death  Nocturnal enuresis (bedwetting)  Oppositional defiant disorder  Aggressive behaviour  Infections  Physical deterioration  Injuries and self abuse  Drowning  Suffocation  Pneumonia  Violence Children who spend a long time in institutions show greatest difficulties in reaching developmental milestones Placing a child in a family- based environment before 6 months substantially increases chances of reaching optimal development milestones

Early Childhood Interventions (ECI) Benefits in HIC & LAMICs well documented: improved cognitive development reduced antisocial behaviour, depression, & health risk behaviours Building of critical skills for children and parents  ECIs are multidisciplinary services designed to meet developmental needs of children  Assessment sensory-motor, cognitive, communication, social and emotional skills & functioning  ECIs include:  Psychosocial support  Physical and occupational therapy  Speech and language therapy  Nursing care services  Nutritional support

Parenting Programmes & Services  Parenting programmes & services provide parents with information, advice, skills & support to meet child's needs  Two key elements :  Provide skills to parents on how to provide stimulating & emotionally supportive environment  Attend parents' own mental health and social support needs Nationwide Positive Parenting Program, Belarus Three Ministries provide parenting services Ministry of Health —parenting programmes at home and Early Childhood Intervention centres Ministry of Education —Mother’s Clubs & Parent Universities (in preschools & Centres for Special Education) Ministry of Labour and Social Protection —parenting services, family therapy & referrals for high risk families

Informal Peer Support for Parents & Caregivers Positive outcomes of peer supports attitudinal changes and increased acceptance improved knowledge and skills improved physical & mental health in parents improved coping & decreased isolation of parents  Peer support allows parents/caregivers to:  Share experiences  Provide mutual emotional & practical support  Share information on community services & supports  Peer support may include:  one-on-one mentorship  community-based parent networks  Electronically based networks (e- groups, discussion forums, mailing lists)

Inclusive Education  Inclusive education means providing meaningful learning opportunities to all within mainstream school system  Successful inclusion depends on:  Child-centred programmes based on individual need  Overall increase in level of support This is a picture of a young girl able to go to mainstream school in Samoa, thanks to the country's national efforts towards inclusive education (Petaia, G.N, 2010)

Financial Assistance/Support for Families  Parent may need to care for child at home & unable to work  Low income means some families struggle to pay for medical and associated costs  Financial assistance helps ensure families can care for their child at home Making Social Allowance Payments available for Parents, Romania families of children with disabilities receive double normal amount of social allowance Complementary personal budget Personal assistant for families with children with severe disabilities

Respite Care  Respite care is temporary child care offered for a specific period of time  Respite services improve:  family functioning  satisfaction with life  capacity to cope with stress  attitudes Short-break Services for Children with Disabilities, St. Petersburg, Russia Short-break services to prevent institutionalisation Provided in home or at trained carers’ home The services have ensured: —continuity of care —assistance to isolated parents —practical support —Assistance for healthcare visits and treatments —improved confidence of parents Evaluation: success in preventing institutionalization  All 61 children involved in the service have remained with their families

Foster Care  Foster care should be made available when children cannot stay with their families  Large variation in use of foster care across countries:  Foster care as 'warehouse' until adoption = X  Foster care as child care & family rehab = √ "Foster care: situations where children are placed by a competent authority for the purpose of alternative care in the domestic environment of a family other than the children’s own family that has been selected, qualified, approved and supervised for providing such care" UN Guidelines for the Alternative Care of Children (2010)

Small group homes  Small group homes may be considered for children who cannot live with their families  Small groups, living in normal houses, integrated into the community  Highly trained, professional workforce to supports children and meet their individual needs  Strong relationships with the birth & extended family to be maintained wherever possible Foster Mothers Initiative, OAfrica, Ghana Small group home run by ‘Foster mothers’ providing specialist care for 8 children with special needs Foster mothers provide for all the care needs - general care, medical support, physiotherapy & education

Conclusion  We need to invest in full range of community supports and services for children and families  Only then can we ensure that all children have the best first chance in life enabling them to grow and flourish