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by Laura M. Justice
Having recently returned from a five-day journey to Ukraine to train Ukrainian speech-language pathologists, I realized one concept that stood out clearly: While we do not speak the same language or share the same culture, our shared profession of speech-language pathology—and what it says about us as individuals—makes us far more alike than we are different.
This trip was the second of two organized through the nonprofit Ukraine Special Needs Orphanages Fund, Inc. (USNOF) to enhance the skills of SLPs and parents of children with disabilities receiving services through an early intervention center.
Education and Treatment
Currently, Ukraine is adopting a variety of laws to improve the quality of life for persons with disabilities. Historically, during the Soviet era, persons with disabilities in Ukraine had few—if any—rights and were typically hidden away in their families' homes or in institutions. With encouragement from international organizations—including the United Nations Children's Fund and the World Health Organization—to improve the rights of persons with disabilities, the Ukrainian government is attempting to improve early intervention, schooling, and community participation for children with disabilities.
These efforts, however, are only in their infancy. For instance, only in 2002 did the government earmark dollars to provide social assistance to families caring for children with disabilities in their homes, yet the amounts available are substantially less than what is needed for appropriate care (about $60/month). In addition, only 3% of families have access to these funds (UNICEF, 2002). Experts also contend that coordination is inadequate among newly established agencies providing medical, social, and psychological services to these families, and families have limited access to quality early intervention programs and elementary schools that meet the needs of children with disabilities (UNICEF, 2002). Thus, many children with disabilities are institutionalized in orphanages (typically abandoned as newborns) or attend full-time residential special education schools, with very poor long-term prospects.
Early Intervention
Historically, the country's health and education infrastructure has not offered treatment or educational opportunities for children with disabilities and their families. The country also lacks institutional supports enabling parents to raise children with disabilities in their natural home environment. The trend toward institutionalization in orphanages, however, is beginning to change: understanding is growing in Ukraine of both disability rights and the economic costs of failing to support educational access for all its citizens.
In light of such trends, early intervention centers are emerging across Ukraine to improve the skills and competencies of children from birth to 5 years of age and to help families raise their children within the natural home environment. One such center—Pahinets—is located in the Rivne Oblast (province) in western Ukraine. It was established in January 2004 in a kindergarten building to provide educational and therapeutic services to children with disabilities in nearby towns and villages. Pahinets features active collaborations with a local parent group as well as a local university. Its SLPs provide individual and small-group treatment to young children with a range of disabilities—from relatively minor to more profound—and to children who live in a nearby orphanage. The only early intervention center in the province, it serves as the model for a similar center being established in the neighboring Lviv oblast.
Visiting Ukraine
In 2005, as part of a USNOF team that included an autism specialist and two physical therapists, I visited Pahinets to conduct a "needs assessment" related to early communication intervention. I met with speech-language clinicians, nursing students, parents, university leaders, and program administrators at the center to identify resources needed to meet the needs of children attending the center. The need for three types of information emerged—general methods for delivering speech-language services, specific treatments for children with disabilities such as autism and cerebral palsy, and what inclusive services might look like in elementary schools.
Working closely with USNOF leadership, my University of Virginia colleague Alice Wiggins and I helped organize two five-day training workshops for Pahinets SLPs and parents. Local psychologists and other specialists also participated. In June 2006, workshop sessions focused on general communication development, augmentative and alternative communication sessions, and advocacy for families.
Most recently, in June 2007, an educational team comprising nine individuals conducted an intensive five-day workshop at Pahinets. I was joined by three other SLPs: Anita McGinty (University of Virginia), Deborah Arin (EBS Healthcare), and Jackie van Lankveld (Speech Services Niagara). Five educators rounded out our team: Alice Wiggins and Amy Sofka (University of Virginia), Diane Browder and Katherine Trela (University of North Carolina-Charlotte), and Dianne Koontz Lowman (James Madison University). Training workshops were offered simultaneously to SLPs and parents of Pahinets children, addressing topics such as treatment techniques for children with autism, treatment of early feeding difficulties, and early communication facilitation. Team members also met individually with parents to offer expert guidance on their children's specific situations. Financial support for the training was provided by the Oak Foundation, EBS Healthcare, the Organization for Medical and Psychological Assistance for Children Overseas (OMPACO), the Ontario Rotary Clubs, and the University of Virginia Preschool Language and Literacy Research Lab.
The SLPs of Ukraine require the support of their North American counterparts, and we must honor in every way that we can assist their "front-line" role in promoting the quality of life for children with disabilities and their families. During each of my three trips to Ukraine in the last five years, I have had startling insights when talking with SLPs of how much unites us in our vigilant concern for the health and well-being of children, our proactive stance toward families, and our deep interest in communication as the most basic and important of all human capacities.
Laura Justice, formerly of the University of Virginia, is professor in the School of Teaching and Learning at The Ohio State University. She can be contacted at justice.57@osu.edu.
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