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Grant paves way for parent advocacy

by Cindy Abole
Public Relations
MUSC’s Division of Developmental Pediatrics is $300,000 richer thanks to the award of a three-year federal grant from the Department of Education. It will support Lowcountry parents and individuals with disabilities. 
 
The federal grant, one of three awarded nationally by the Department of Education under the regional Individuals with Disabilities Education Act (IDEA), was awarded last month to MUSC’s Developmental Pediatrics program, the Family Resource Center for Disabilities and the Advocacy Coalition for People with Disabilities (ACPD), a non-profit organization created to support Lowcountry parents, families and individuals with disabilities. 
 
The grant will support educational programs sponsored by the Lowcountry’s community-parent resource center that will yield better communications to advocacy issues and resources for educators, consumers, professionals and service providers.
 
“We are thrilled to partner with the ACPD as we implement this grant which will allow us to serve the families in Charleston county who have children with special needs,” said Jeffery R. Craver, Ph.D., assistant professor of pediatrics and project director for the grant. “Our division has always been committed to helping parents and related community professionals to access appropriate services for children who have special education needs. This grant will certainly allow us to educate others and become even more involved.”   
 
Craver is a certified school psychologist and licensed psycho-educational specialist. He is assisted by project evaluator Ron Brown, Ph.D., professor of pediatrics and director of program development and research. The center has also contracted with nationally recognized disabilities education specialist, Mitchell Yell, Ph.D., as an in-service consultant and trainer for the program. Yell has worked successfully with the S.C. Autism Society in helping parents regarding legal rights, advocacy issues and creating individual education programs.
 
“Parents don’t really understand the laws and rights that their children possess,” said Yell, who is an associate professor at the University of South Carolina’s Department of Special Education. “With this grant, MUSC and the Lowcountry community can strive to  emulate other successful parent-support programs in different parts of the country.”
 
In addition to directing parent-mentor training in Charleston, Yell will also lead two parent training workshops in Columbia this spring and fall 2000. 
   
“Some South Carolina schools and school districts are excellent in providing support,” Yell said. “We need stronger advocacy through parent support groups like Parent Training and Resource Center (PTRC) to focus on quality of life issues for children and young adults with physical, mental, emotional and learning disabilities and their families.” 
   
The PTRC was created in 1995. It serves about 3,000 people in the Tri-county area. The main site, located on the MUSC campus at Rutledge Tower, houses a lending library of books, training curricula, journals, audio and video cassettes and Internet references.  
 
New funding will support a peer-parent mentor program, staff for one-on-one consultations and continual follow-up for participants. The program is organized for parents to receive training as mentors and assist other Charleston county parents in accessing information and utilizing special education services. 
 
Plans are underway to establish additional PTRC satellite branches at the Migrant Mission Head Start Program in John’s Island and other locations that will be determined in the North Charleston and West Ashley areas.
 
Grant funding will provide a one-day forum, which focuses on Lowcountry disability issues and concerns. The project will also pay for a quarterly newsletter and will soon provide access to a new PTRC website. 
 
“Families have long expressed the need for current and relevant information regarding disability issues,” said Beverly McCarty, program coordinator, Parent Training and Resource Center. “The PTRC, guided by parents and professionals, strives to meet these resource needs. The collaboration between families and the professionals who serve them enhances the communications for everyone and results in a program that addresses the needs of the entire community.”
 

Mother’s devotion opens doors for others

Christy Bethke’s pregnancy was a typical one. It wasn’t until her delivery in 1988 that she discovered she was the mother of twin boys. 
 
Nearly two years later, Bethke noticed that the younger of the twins, Alex, was experiencing developmental delays. As he grew older, he also suffered from seizures.
 
“I didn’t know it was up to the parents to notice these things and do something about it,” Bethke said. “I relied on my pediatrician and other professionals who blew off concerns about Alex’s early symptoms.”
 
Alex has shown steady progress working with a speech therapist since age 4. He was enrolled in special education classes at Oakland and Orange Grove Elementary Schools. He is currently a student at C.E. Williams Middle School.
 
Like any mother, Bethke focused on educating herself about her son’s condition. She also searched for educational information and learned about other resources to help enhance Alex’s learning. 
 
Once again, Bethke entrusted her pediatrician and other resources for guidance. Soon she turned to the Parent Training Resource Center (PTRC) and BabyNet, a federally funded program that provides early intervention services to infants and toddlers with developmental disabilities, for guidance.
 
“It’s all about good communications,” Bethke said. “The PTRC is what any community needs. It serves as a clearinghouse of information much like one-stop shopping.” 
 
She supplemented her own knowledge with PTRC resources by joining other local support groups including the Mother of Twins Club and Lowcountry Chapter of the S.C. Autism Society as an outlet to relate and meet other parents and share experiences.    
 
“Right now, South Carolina may be at the bottom, but they certainly aren’t staying there for long,” Bethke said. “It’s a problem when kids like mine slip through the cracks when it comes to diagnosing and providing early interventional care. Having this little corner of the world available is perfect for parents to get valuable information.”