Pediatric specialists from New Mexico are sharing expertise with their counterparts from a city near Moscow thanks to a project funded by a Russian supermodel with a rags-to-riches story.
Natalia Vodianova has been the face of Calvin Klein campaigns and she’s graced the cover of Vogue. She’s also the founder of the Naked Heart Foundation whose mission is to support people with disabilities. The organization has many projects, including funding dozens of all-inclusive play parks in Russia and creating support networks for families of children with disabilities.
Staff and faculty from the University of New Mexico’s departments of neurology, physical therapy, speech and language therapy, and from Carrie Tingley Hospital are participating in a Naked Heart Foundation program aimed at bringing new ideas about working with children with special needs and their families to facilities in Russia through international exchange experiences.
“We want to learn modern approaches to working with children with disabilities,” said Tatiana Morozova, a child psychologist from St. Petersburg who is on the Naked Heart Foundation board and an adjunct professor in the Neurology Department at the University of New Mexico.
Morozova, fellow Naked Heart Foundation board member Svyatoslav Dovbnya, a St. Petersburg child neurologist, and a group of physicians and therapists from a hospital in the city of Tula, near Moscow, recently visited Albuquerque to observe techniques used here to help children with cerebral palsy.
The goal of the intercultural exchange is to introduce staff from the Tula hospital to modern approaches to supporting children with cerebral palsy that can be implemented at their location, said Dr. John Phillips, a UNM Professor of Neurology and Medical Director of the Mind Research Network.
Phillips has worked for many years with doctors in Russia who are involved in the treatment of children with cerebral palsy. The condition is the result of a brain injury or brain malformation, typically at or before birth. It affects body movement and muscle coordination and can involve intellectual, visual and hearing impairment.
When the opportunity to participate in the Naked Heart Foundation program arose about two years ago, he saw it as a great opportunity. He said it has been the custom in Russia to put children with cerebral palsy and autism in orphanages.
In the United States, Phillips said, the approach has shifted to developing support services for the children and their families with the emphasis being on quality of life.
“Children with cerebral palsy can make good functional progress with the right kind of support,” said Phillips.
That’s where the connection with the Russian supermodel comes in. Vodianova, nicknamed “Supernova,” came from a poor family in Nizhny Novgorod. Growing up, she helped care for her half-sister who was born with cerebral palsy and autism. After she became a successful model, she started the Naked Heart Foundation to provide play parks and supportive environments for children with disabilities.
Phillips said the hospital in Tula has similar facilities to Albuquerque’s Carrie Tingley Hospital, which provides therapy and rehabilitation services to children with physical and developmental disabilities. He and Marybeth Barkocy, assistant professor in the physical therapy department at UNM, have visited the Tula hospital in the last two years to demonstrate how they work with children.
Barkocy said they showed the Russians how to assess children’s capabilities and collect data that could help show their progress over time. They discussed how physicians and therapists here work as a team with each child, involving the child’s family in developing a care plan.
“It’s always a family-centered approach,” said Barkocy.
A group from Tula visited UNM in 2016 to observe the techniques and they maintain regular contact via Skype with Phillips, Barkocy and others from UNM to discuss ongoing progress.
Funding from the Naked Heart Foundation enabled another group of 13 Russians to travel to Albuquerque this summer. Their visit Aug. 20-26 included a tour of the New Mexico School for the Blind and Visually Impaired in Albuquerque. The school has 46 students ages 3 to 6 years old from around central New Mexico. About half are blind or visually impaired because of a brain-related problem, many have cerebral palsy.
The school’s lead therapist Ellen Kivitz and speech language pathologist Jessica Mount Matney guided the Russians through the classrooms showing how teams of teachers and therapists work together to assist children in developing skills in movement, play and communication.
“We haven’t worked with children in this way before. Special education is different in Russia. We want to be able to show a different reality for them. Children have the same needs worldwide,” Morozova said.