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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388


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

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.

WVDDC resources for children with disabilities

WVDDC resources for adults with disabilities


Handicap Placard

DMV

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

Parking Application for a Mobility Impaired Person


State Medicaid 

West Virginia Department of Health and Human Resources (WVDHHR)

 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)

 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)

 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

Children with Special Health Care Needs (CSHCN) Program

 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.

CSHCN Application

 1-800-642-8522

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)

 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.

WVBTT Application


Education

West Virginia Department of Education (WVDE) Office of Special Education

 1-304-558-2696

WVDE Information on IEP's

Office of Special Education 


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.

Online Conservatorship Tutorial

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

West Virginia Courts has forms for conservatorship and guardianship.

Handbook for Guardians and Conservators


Transition to Adult Services

 West Virginia Department of Education

 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

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)


Legal Resources 

ARC of West Virginia

 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

West Virginia Rettsyndrome.org Families Facebook page