Virginia Resources

Family Empowerment Representatives  | Treatment and Research Centers | VA 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

Ann-Marie Kinzler, volunteer Family Empowerment Representative,  Manassas Park, VA   amkinzler@hotmail.com 1-703-335-0911

Deborah Jennings, volunteer Family Empowerment Representative,  Chesapeake, VA  angeldove1075@gmail.com1-757-717-1960 


Treatment and Research Centers


Clinics & Clinical Trials

None at this time


 State Agencies - Virginia


Local Service Agencies

Community Service Board (CSB)

CSB is the point of entry into the publicly funded system of services. Contact your local office for more information.

Department of Behavioral Health and Developmental Services (DBHDS)

1-804-786-3921

DBHDS can help access services and supports for people with intellectual and developmental disabilities. 

Department of Medical Assistance Services (DMAS)

1-804-786-7933

Department of Medical Assistance Services (DMAS) DMAS is the agency that administers Medicaid in Virginia. 


Handicap Placard

 Virginia DMV

Contact your city or municipality.  They will mail out the form. You can also use the link provided. You and your child's pediatrician should fill out the form and take it back to the municipal offices to receive the placard.


State Medicaid 

Common Help Virginia 

Common Help Virginia can help determine eligibility for services and check benefits.

 Technology Assisted Waiver

 The Technology Assisted Waiver provides services to children beginning at birth with no maximum age. Parent income is not considered when the child is under the age of 18 when applying for this waiver.

Intellectual Disability Waiver (ID Waiver) 

Administered by the Department of Behavioral Health and Developmental Services (DBHDS) and the Department of Medical Assistance Services (DMAS), the ID Waiver provides services to persons with a diagnosed intellectual disability. Contact your local CSB to add your child to the waitlist.

Individual and Family Developmental Disabilities Support Waiver (DD Waiver)

The DD Waiver is available to children age 6 and over with a diagnosed developmental disability. Contact your local Virginia DBHDS office location for screening.

Day Support Waiver

The Day Support Waiver provides services to individuals on the waiting list for the ID Waiver. Contact your local CSB to get on the waiting list.


Early Intervention

Infant and Toddler Connection of Virginia

1-800-234-1448

Infant and Toddler Connection of Virginia provides early intervention supports for infants and toddlers. 

 Care Connection for Children

1-804-827-1795

Care Connection for Children is a statewide network of six regional programs that coordinates the health care, community support services and resources to children with special health care needs. careconnect@mcvh-vcu.edu 


Education

Virginia Department of Education

1-804-786-8079

Special Education administers special education.


Conservatorship

Conservatorship is a legal proceeding in which an individual or agency is appointed by a court to be responsible for a person who needs assistance in activities of daily living. This process should be started approximately 6 months before the 18th birthday.

Virginia Department of Aging

1-804-662-9333

Virginia Department of Aging has many resources to help with the guardianship process.


Transition to Adult Services

 Virginia Department of Education Transition Services (VDOE) 

VDOE's website provides support, information and resources for a successful transition from school to adult services.

VDOE Resources

Transition Resources available through the VDOE.


Parent Recommendations

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


 Medical Professionals

Dr. James Wilson 

 Carilion Pediatric Neurology  1-540-985-8454

Dr. Richard Cordle  

Carilion Pediatric GI/Nutrition Clinic  1-540-985-9832

ClinicalTrials.gov

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


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

Healing Strides of VA 

 1-540-334-5825

  info@healingstridesofva.org 


Legal Resources

The ARC of Virginia

1-804-649-8481

The ARC of Virginia supports the rights of individuals with disabilities in Virginia. 


Recreation

Virginia State Parks

Accessible parks in Virginia

Busch Gardens

Kings Dominion

Kings Dominion has many attractions and accessible features. They also offer a Ride Boarding Pass program which gives a return time for people to come back and enter through the exit of the ride.


More Parent Recommendations

Virginia/DC Rett Syndrome Families Facebook page

Chart of Waiver Services available in Virginia

Nacolby's House, Inc.

1-757-717-1960

Nacolby’s  House  provides compassionate and loving in-home care to special needs children, young adults with disabilities and seniors that need a helping hand or companionship.