2018 At-A-Glance

CED trainees and clinicians observe the Feeding & Swallowing Clinic remotely using telemedicine and discuss strategies to improve feeding skills

CED Upgrades Facilities to Provide Telemedicine Services

Transportation continues to be a barrier to services for individuals with disabilities and their families living in West Virginia. To better serve clients who cannot travel to the CED's offices, the CED invested in technology to provide telemedicine services. Telemedicine services provide the opportunity for a trained provider to speak directly with a family and provide the needed services without having to be in person. A variety of services can be provided using this method including, but not limited to, clinical services, social services and information and referral. These methods also broaden the center's ability to train families, providers and trainees from multiple disciplines without overwhelming a family with a large group of trainees who may be shadowing the visit. The new technology allows the center to partner with other centers throughout the state and nation on training efforts.

CED's clinical space is now equipped with 3 video stations that allow users to broadcast services through a secure network, record sessions for future viewing and collaborate with clients and practitioners in other parts of the state and country.

"Our new telemedicine system has greatly extended the reach of the CED's Feeding and Swallowing Clinic. We can now teleconference with a child's therapists, teachers, or caregivers who are not able to attend clinic in person. We can also provide follow-up appointments for families directly in their homes. Telemedicine allows the child to receive intervention in their natural environment. Families are also given the opportunity to take home a video recording of their session to revisit the strategies they learned or to share with other providers to discuss recommendations." said Cassie Miller, CED Feeding Clinic Coordinator.

Students take the stage


Last spring 30 kids of all abilities performed the musical production "On the Other Side of the Fence" presented by the WVU DreamCatchers program. The DreamCatchers program, an inclusive music therapy and musical theatre program, is a collaborative between the WVU CED, the WVU Music Therapy program and the WVU School of Medicine.

The program provided children ages 5-18 of all abilities the opportunity to participate in an extracurricular musical theatre experience in an exciting, safe and supportive environment for self-expression at low cost to families.

DreamCatchers launched its second year in the fall and incorporated opportunities for children to write scripts, develop choreography and work on other production processes to expand their creativity.

"Our Dream Catchers experience was incredible! He gained a lot of confidence, he was excited to come especially when he got closer to doing what he loved with the tech stuff. He was always asking if ‘tonight was the night,' ready to come, very excited. I saw his confidence increase throughout the course of the term." ~DreamCatchers Parent

Returning to work after TBI

After sustaining a traumatic brain injury (TBI) in a motor vehicle accident, Gerald was unable to return to his place of employment. By working with the CED's TBI Services program Gerald learned about resources available to help him with a variety of needs. The TBI resource coordinator assigned to him worked with him to apply for funding for dentures and job placement services through the West Virginia Division of Rehabilitation Services.

Gerald applied for services and was approved to receive dental services and dentures that can improve employment options and health. He was also placed as a maintenance worker at the I-64 Welcome Center where he has been working since July 2017.

In 2018, the TBI program helped Gerald apply for funds to help with vision services and truck tires both of which he received. "In my opinion employment is the great equalizer. My hope is that Gerald will continue to be engaged in his community in an enhanced employment setting" said Deb Wanzer, Gerald's resource coordinator.

Family benefits from

The CED provides many programs and services that individuals and families can participate in. This year the Ash family had many doors opened by programs working together. Heather Ash enrolled her seven children in the DreamCatchers program hoping to engage her children in a community activity that included everyone despite their differences in age, physical skills and cognitive abilities.

As her children participated in the DreamCatchers program, Heather attended the Circle of Parents support group meetings sponsored by the Paths for Parents program at the CED. During these meetings parents have the opportunity to network and learn about resources, share experiences and ask questions about service gaps.

While attending, Heather learned about the CED's assistive technology program, West Virginia Assistive Technology System (WVATS), and their loan program.

The Ash family borrowed a beach wheelchair from the WVATS program for their son Noah, a teenager with spina bifida, who is getting bigger and heavier to carry.

Since Noah is 17 years old, Heather plans to work with the CED's Next Steps Clinic to help Noah make decisions for his future beyond high school.

"He loved it! He loved being able to be in the water feeling the waves. What a blessing this was for him & us! Thanks so much!"

Trainee publishes research

a photo of Lauren Glover

Speech-pathology trainee, Lauren Glover, was published in Clinical Archives of Communication Disorders journal. The article "A Study of the Judgment Accuracy of Repeated /r/ Stimuli by Graduate Clinicians," shared findings from research conducted alongside her mentor, Dennis Ruscello. The study examined the integrity of judgement accuracy and found no statistically significant evidence of auditory perceptual confusions.

Glover was a graduate trainee with the CED's Leadership Education in Neurodevelopmental Disabilities (LEND) program. The LEND program trains students by using mentors from their fields of study to prepare them to serve children and youth with disabilities and their families. Since graduation, Lauren was hired to work as a speech pathologist at the WVU Medicine Children's Neurodevelopmental Center.

Neonatal abstinence syndrome service challenge collaborative developed

This year the CED received a five year grant to work with partners to coordinate efforts addressing health concerns for children, parents and their families impacted by neonatal abstinence syndrome (NAS). The CED is partnering with the West Virginia Office of Maternal, Child, and Family Health, the maternal and infant risk surveillance system, Project W.A.T.C.H. and the West Virginia Home Visitation Program. This collaborative has developed the Appalachian Rural Health Integration Model (ARHIM) which will work to continue strengthening the existing infrastructure for children with special needs and their families.

The newly funded project will expand the home visitation infrastructure in six northern West Virginia counties that have some of the greatest incidence rates of NAS among infants. Expanded programming will address parental depression, service coordination with substance use providers within the region, social service patient navigation and the availability of education, employment and development specialists.

"Home visiting programs in WV are serving more families impacted by substance use and demonstrating higher needs than ever. The opportunity to better meet the needs of families through expanded services and stronger resource efforts for families will have significant long-term impact on our State. We look forward to the partnership with WVUCED and Project WATCH," said Jackie Newson, Director of the West Virginia Home Visitation Program.

photo graph of panelists

Panelists: left to right- Weston Kensinger, Ph.D - Penn State Harrisburg; Mark Cody Smith, MD - WVU Neonatologist; Lauren Swager, MD - WVU Chestnut Ridge Hospital; Christina Mulins,MA, WV Department of Health and Human Resources

Opioid use and disability panel discussion

The CED is seeing the impact that opioid use has on children and adults with disabilities in West Virginia and has developed several initiatives to target barriers and address health concerns. In April, the CED hosted a panel presentation that looked at the various aspects of opioid use and its relationship with the disability population.

Panel members from various disciplines outlined and discussed maternal opioid use and the potential impact on developmental disability rates, explored existing evidence and potential gaps related to opioid use among individuals with acute or chronic disabilities. The panel also discussed needed next steps in practice, research and policy focused on opioid effects for this population.

Families and physicians work together to develop training simulations

Family-centered care is a cornerstone of the CED and its programs. Understanding each family’s unique needs and experiences is important for health professionals. The CED’s Family to Family program is working with WVU Medicine faculty and physicians to develop the WVU Family Experience and Delivery of Chronic Care (DOCC) project simulation launching in the spring of 2019. The STEPS Center simulation experience for medical students was created by parents of children with special health care needs working side-by-side with faculty to impact the way they deliver patient care. Support for this project comes from funding provided by Health Resources and Services Administration (HRSA).

Left to right: Mary Shoemaker (parent), Erika Hastings (parent), Teri Utt (parent), Tracy Bowman (parent & service provider), Michaela Amendola (LEND Trainee), Amy Summers (WVU-IPE Program Specialist), Lori Heginbotham (CED), Tina Crook (parent), Donna Pauley-Wilson (CSHCN RN Administrator), Roger May (CED), Dr. Linda Friehling (WVU Pediatrics), Kristen Arogast (LEND Trainee), Janine Bray (parent), Autumn Johnson (parent), Dr. Timothy Lefeber (WVU Pediatrics), Lee Ann Miller (STEPS Director of Education), Wanda Hedrick (parent)

WVU flying WV CED
2018 Recap
80 Employees
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