Zero Project Conference 2015
Independent living and political participation: innovative
policies and practices for persons with disabilities
Promoting Rights and
Community Living for Children
with Psychosocial Disabilities
Natalie Drew
World Health Organization
Impact of Institutionalization



Mental health impact

Attachment disorders

Depression

Anxiety

Nocturnal enuresis
(bedwetting)

Oppositional defiant disorder

Aggressive behaviour
Physical health impact

Malnourishment

Infections

Limb atrophy

Physical deterioration

Pneumonia

Injuries and self abuse
High death rates

Famine

Drowning

Physical deterioration

Suffocation

infections

Pneumonia

Freezing to death

Violence
• Children who spend a long
time in institutions show
greatest difficulties in
reaching developmental
milestones
• Placing a child in a familybased environment before
6 months substantially
increases chances of
reaching optimal
development milestones
Early Childhood Interventions (ECI)

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
Benefits in HIC & LAMICs well
documented:
• improved cognitive
development
• reduced antisocial behaviour,
depression, & health risk
behaviours
• Building of critical skills for
children and parents
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

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 (egroups, discussion forums, mailing lists)
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
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
Short-break Services for Children with
Disabilities, St. Petersburg, Russia
• Short-break services to prevent
institutionalisation
• Provided in home or at trained carers’ home

Respite services improve:
 family functioning
 satisfaction with life
 capacity to cope with stress
 attitudes
• 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