Yogyakarta, Indonesia – “Before, I felt so isolated! Society didn’t accept me and my family—my child—as we are. Now I feel more confident knowing other families like ours,” said Puryanto after his first Caregiver Support Group meeting this past February. When Puryanto’s son Anwar was born with cerebral palsy in 2005, he had no way of knowing what it meant. Very few people from his village had ever seen anything like it before, and nobody could tell him what had caused it or whether it could be cured. Now, Puryanto is one of 68 parents who are part of UCP Wheels for Humanity’s first four support groups for caregivers of children with disabilities. “I’m looking forward to continuing with these meetings so I can understand my child more and help his progress,” Puryanto said.
This newest UCP Wheels undertaking is in direct response to a distinct need, long observed by staff and volunteers at our International Seating Clinics. “As clients are being fitted for their wheelchairs, parents often ask us questions that demonstrate they can’t access even the most basic information about their child’s condition,” says Program Manager Kate Selengia.
These experiences inspired the core concept for the program, which is based on an extensive study of needs and best practices. Focus areas include the presentation of factual information on the disabilities being experienced within the group; basic health, hygiene, and nutritional guidelines; and the importance of school enrollment, social integration, and activity in the community.
“It’s a wonderful thing to see… the moment when a parent is freed from the grief and confusion of not understanding their child’s disability,” says UCP Wheels Executive Director Michael Allen, “And we’re looking forward to developing more community support networks like this in the other countries where we work.”
UCP Wheels thanks Dalai Lama Fellow Morgan Duffy for her help developing the Caregiver Support Group curriculum.