West Virginia
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
Family Empowerment Representatives
Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.
National Family Empowerment Representative
Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
Family Empowerment Representative
Abigail Justice, volunteer Family Empowerment Representative,
[email protected] 304-741-9396
Treatment and Research Centers
Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.
Clinical Trials
Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.
State Agencies & Resources
Local Service Agencies
West Virginia Developmental Disabilities Council (WVDDC)
1-304-558-0416
WVDDC assures that West Virginians with developmental disabilities receive services, supports, and other forms of assistance they need.
State Medicaid
West Virginia Department of Health and Human Resources (WVDHHR)
Visit West Virginia Department of Health and Human Resources (WVDHHR) Website
1-304-356-4892
Within WVDHHR is the West Virginia Bureau of Medical Services. This is an overview of Medicaid programs available in West Virginia.
Children with Disabilities Community Service Program Waiver (CDCSP)
Visit Children with Disabilities Community Service Program Waiver (CDCSP) Website
1-304-356-4853
Children with Disabilities Community Service Program Waiver (CDCSP) CDCSP is a waiver that provides benefits to severely disabled children up to age 18 who qualify. For more information or to apply, call Program Manager, Taniua R. Hardy.
Intellectual and Developmental Disabilities Waiver (IDDW)
Visit Intellectual and Developmental Disabilities Waiver (IDDW) Website
1-304-356-4853
IDDW provides services that instruct, train, support, supervise, and assist individuals who have intellectual disabilities and/or developmental disabilities in achieving the highest level of independence and self-sufficiency possible in their lives. For more information or to apply, call Program Manager, Taniua R. Hardy.
CSHCN Application
View or Download the CSHCN Application
1-800-642-8522
Local DHHR Offices
View Local DHHR Offices
Apply for Medicaid online or at your local DHHR Office.
Early Intervention
West Virginia Birth to Three Program (WVBTT)
Visit West Virginia Birth to Three Program (WVBTT) Website
1-866-321-4728
WVBTT is a statewide system of services and supports for children under age three who have a delay in their development, or may be at risk of having a delay, and their family. To refer your child, complete the WVBTT Referral Form and forward to the office that services your child’s location or call.
Education
West Virginia Department of Education (WVDE) Office of Special Education
Visit West Virginia Department of Education (WVDE) Office of Special Education Website
1-304-558-2696
Conservatorship
Online Conservatorship Tutorial
Visit the Online Conservatorship Tutorial Website
To be officially appointed a guardian or conservator in West Virginia, you must complete mandatory training within 30 days of the court’s determination that there is a protected person.
West Virginia Courts
Visit West Virginia Courts Website
West Virginia Courts has forms for conservatorship and guardianship.
Handbook for Guardians and Conservators
View or Download the Handbook for Guardians and Conservators
Transition to Adult Services
West Virginia Department of Education
Visit West Virginia Department of Education Website
1-800-642-8541
The West Virginia Department of Education can help parents transition their children to adult services.
Handicap Placard
DMV
Visit DMV Website
DMV issues handicap placards. You can apply in person or by mail. The application must be certified by a medical professional. Submit the application in person at a WV DMV office or mail to Division of Motor Vehicles, Mobility Impaired Placards and Plates, P. O. Box 17010, Charleston, WV 25317.
View or Download the Parking Application for a Mobility Impaired Person
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
ARC of West Virginia
Visit ARC of West Virginia Website
1-304-422-3151
The ARC of West Virginia provides programs and services to children with developmental disabilities and their families.
Additional Resources
West Virginia IRSF Families Facebook page
Visit West Virginia International Rett Syndrome Foundation Families Facebook page
Click and ask to join!