Promoting the rights of Children with disabilities innocenti digest no

particularly because it fosters the active involvement 
of women from the low-income target communities 
where Samadhan operates.
77
Other issues may arise as parents or caregivers grow 
older and in turn come to require support. Crea-
tive solutions include ’shared care’ or short break 
schemes. Short break carers look after children with 
disabilities on a regular basis for limited periods of 
time. These can be anything from a few hours a 
week to a few days a month. This gives the parents 
a break from providing full-time care and helps chil-
dren make new friends, widen their experience and 
expand their social circle.
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The provision of shared 
care is also critical when children are very young and 
parents are adjusting to new challenges.
Outside the home, parents’ organizations, whether 
formal or informal, have an enormous potential to 
promote positive attitudes towards children with dis-
abilities, advocate for change and raise the profile of 
disability issues both at local and national levels (see 
box 6.2).
Box 6.1 The Portage Model
The Portage Model for Early Intervention,
i
which 
originated in Portage, Wisconsin, USA, was 
developed in response to the growing need 
to provide services at home to young children 
with disabilities living in rural communities. The 
model has now been adopted in 90 countries and 
translated into more than 30 languages. 
Because the role of a child’s parents and family 
is critical to the child’s successful early devel-
opment, the first priority is to support family 
members in their own homes to become more 
confident and competent when there are con-
cerns about a child’s development. The Portage 
Model provides well-structured assessment 
and learning procedures and an individualized 
curriculum based on the child’s current level of 
development and the family’s own priorities and 
resources. Although the home is regarded as 
the natural learning environment, the model can 
also be centre-based in the local community, as 
in Japan. 
Portage activities stimulate the achievement 
of developmental milestones that will help 
maximize the child’s independence as well as 
empower parents and caregivers through active 
involvement in their child’s development. Parents 
are assisted by a Home Visitor who works with 
them to decide on priorities for the next steps 
in development, and they jointly decide on the 
means of helping the child to reach each new 
milestone, however small. 
Home Visitors come from several backgrounds: 
they may be teachers, occupational therapists or 
social workers. They can also be other parents 
who have experience working with young chil-
dren, in which case they are provided with train-
ing by the Portage Association. Although Home 
Visitors need only a brief period of preparation, 
they have continued access to support through 
weekly group meetings with a supervisor. 
While the Portage Model usually requires chil-
dren and their families to work in isolation, the 
approach offers distinct advantages: it is popular 
with families; it represents a highly structured, 
yet simple and modifiable teaching package; it 
uses a home-based approach adaptable to daily 
living skills; it is inexpensive, widely available 
and easy to translate; it enables greater continu-
ity of care than segmented service approaches; 
and it provides a means to strengthen the bond 
between children and families.
Source:
i 
See ; Rodgers, Gene R., ’A 
Word about Portage’, 1998,
Portage.pdf >.

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24
Innocenti Digest No. 13
Promoting the Rights of Children with Disabilities
Los Pipitos is an active parents’ organization in 
Nicaragua that supports children and adults with dis-
abilities through innovative community programmes, 
including dance and creative movement, visual arts, 
drama and music.
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It was founded in the mid-1980s, 
when 21 parents of children with a range of impair-
ments met in the garage of a house in Managua to 
share knowledge and exchange experiences with the 
aim of finding alternative and creative ways to help 
their children. Today, Los Pipitos has a membership 
of more than 14,000 families throughout Nicaragua.
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Support through parents’ organizations is often 
crucial as well for such purposes as assisting 
families with health services for their children 
with disabilities, whose health situations are often