Promoting the Rights of Children with Disabilities, UNICEF

Box 6.1 The Portage ModelThe Portage Model for Early Intervention, i whichoriginated in Portage, Wisconsin, USA, wasdeveloped in response to the growing needto provide services at home to young childrenwith disabilities living in rural communities. Themodel has now been adopted in 90 countries andtranslated into more than 30 languages.Because the role of a child’s parents and familyis critical to the child’s successful early development,the first priority is to support familymembers in their own homes to become moreconfident and competent when there are concernsabout a child’s development. The PortageModel provides well-structured assessmentand learning procedures and an individualizedcurriculum based on the child’s current level ofdevelopment and the family’s own priorities andresources. Although the home is regarded asthe natural learning environment, the model canalso be centre-based in the local community, asin Japan.Portage activities stimulate the achievementof developmental milestones that will helpmaximize the child’s independence as well asempower parents and caregivers through activeinvolvement in their child’s development. Parentsare assisted by a Home Visitor who works withthem to decide on priorities for the next stepsin development, and they jointly decide on themeans of helping the child to reach each newmilestone, however small.Home Visitors come from several backgrounds:they may be teachers, occupational therapists orsocial workers. They can also be other parentswho have experience working with young children,in which case they are provided with trainingby the Portage Association. Although HomeVisitors need only a brief period of preparation,they have continued access to support throughweekly group meetings with a supervisor.While the Portage Model usually requires childrenand their families to work in isolation, theapproach offers distinct advantages: it is popularwith families; it represents a highly structured,yet simple and modifiable teaching package; ituses a home-based approach adaptable to dailyliving skills; it is inexpensive, widely availableand easy to translate; it enables greater continuityof care than segmented service approaches;and it provides a means to strengthen the bondbetween children and families.Source:iSee ; Rodgers, Gene R., ’AWord about Portage’, 1998, .In South Africa, where significant progress is beingmade to promote the rights of children with disabilities,the Law Commission Review of the Child CareAct 1983 recognizes the importance of empoweringparents to care for their children at home. It suggeststhat this requires improved health care services, accessibleschools, free or affordable assistive devicesand support programmes for parents. It also stressesthe need for a more integrated approach to the deliveryof services in order to help parents navigate theirway through the system more efficiently and receivemore coherent and effective provision. 75A pioneering example of an influential home-basedapproach is the Portage Model for Early Intervention(see box 6.1).An early intervention programme with some similarityto Portage has been run by the Samadhan NGOin the poorest areas of Delhi, India for some years.Samadhan trains local community workers, the majorityof whom are women, to identify children withimpairments – particularly intellectual impairments –in their community. Under the early intervention programme,which caters for children up to six years ofage, community workers collaborate with mothers ina one-to-one situation in the family home. This helpsto increase the mother’s confidence and also encouragesother family members to become involved inthe child’s development. Families are supported byneighbourhood community centres established bySamadhan, where assessment, screening, diagnosisand programme planning is done. Apart from providingsupport for early childhood development, thecommunity workers create simple toys and teachingaids from locally found and low-cost materials. 76 Theearly intervention service has been a great success,particularly because it fosters the active involvementof women from the low-income target communitieswhere Samadhan operates. 77Other issues may arise as parents or caregivers growolder and in turn come to require support. Creativesolutions include ’shared care’ or short breakschemes. Short break carers look after children withdisabilities on a regular basis for limited periods oftime. These can be anything from a few hours aweek to a few days a month. This gives the parentsa break from providing full-time care and helps childrenmake new friends, widen their experience andexpand their social circle. 78 The provision of sharedcare is also critical when children are very young andparents are adjusting to new challenges.Outside the home, parents’ organizations, whetherformal or informal, have an enormous potential topromote positive attitudes towards children with disabilities,advocate for change and raise the profile ofdisability issues both at local and national levels (seebox 6.2).23 Promoting the Rights of Children with Disabilities Innocenti Digest No. 13