West Virginia

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, Rettsyndrome.org
sbrant@rettsyndrome.org  1-913-221-8157

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.

Applying for IDDW

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.

Online Medicaid Application

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.

View or Download the WVBTT Application

Education

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

If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org.

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 Rettsyndrome.org Families Facebook page

Visit West Virginia Rettsyndrome.org Families Facebook page

Click and ask to join!