West Virginia Resources
Family Empowerment Representatives | Treatment and Research Centers | WV State Agencies | Parent Recommendations
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.
Samantha Brant - Family & Community Engagement Manager, Rettsyndrome.org sbrant@rettsyndrome.org 
1-913-221-8157
Treatment and Research Centers
Clinics & Clinical Trials - none at this time
Signifies site involved with the Natural History Study
The objective of this study is to gather as much data as possible about children and adults with Rett syndrome. This includes information about nutrition, development, and height & weight measurements. This data will stimulate more clinical research and better prepare us for future clinical trials.
State Agencies - West Virginia
Local Service Agencies
1-304-558-0416
WVDDC assures that West Virginians with developmental disabilities receive services, supports, and other forms of assistance they need.
Handicap Placard
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
State Medicaid
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.
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.
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.
1-800-642-9704
The Children with Special Health Care Needs (CSHCN) Program, in the Office of Maternal, Child and Family Health (OMCFH) advances the health and well-being of children and youth with certain chronic, debilitating conditions by providing specialized medical care and care coordination services to children under 21 years of age who meet financial and medical eligibility criteria. All applicants for the CSHCN program must first apply for Medicaid and CHIP through their local Department of Health and Human Resources Office.
1-800-642-8522
Apply for Medicaid online or at your local DHHR Office.
Early Intervention
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
1-304-558-2696
Conservatorship
Conservatorship is a legal proceeding in which an individual or agency (to be known as the "conservator") is appointed by a court to be responsible for a person who needs assistance in daily living. Check with your child's high school or your county Superior Court Probate Office for information on Self Help Clinics. This process should start 6 months before the 18th birthday.
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 has forms for conservatorship and guardianship.
Transition to Adult Services
1-800-642-8541
The West Virginia Department of Education can help parents transition their children to adult services.
Parent Recommendations
If you have favorite resources to share with others, please email that information and your experience to areed@rettsyndrome.org
Medical Professionals
This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.
Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)
Legal Resources
1-304-422-3151
The ARC of West Virginia provides programs and services to children with developmental disabilities and their families.
Recreation
More Parent Recommendations