DC Resources

Family Empowerment Representatives | Treatment and Research Centers |  DC 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, amkinzler@hotmail.com  1-703-335-0911


Treatment and Research Centers

Clinics & Clinical Trials - none at this time


State Agencies - DC


Local Service Agencies 

Department on Disability Services (DDS)

DDS provides the residents of the District of Columbia with information, oversight and coordination of services for people with disabilities and those who support them, such as service providers and employers.

Department on Disability Administration (DDA) 

1-202-730-1700

Department on Disability Administration (DDA) is the public agency responsible for the oversight and coordination of all services and supports provided to qualified persons with intellectual disabilities in the District of Columbia. 

How to apply for DDA services 


Handicap Placard 

Department of Motor Vehicles

1-202-737-4404

Contact the D.C. office of the Department of Motor Vehicles or go to the municipality office where you live and request an application for a Handicap Placard for your handicapped child.  You and your child's physician will fill it out.  Either return to the municipality or return it to the D.C. office of the DMV.  This is only to be used when the child is in the car. dmv@dc.gov 


State Medicaid  

TEFRA/KATIE BECKETT Medicaid

Medicaid in DC offers TEFRA/KATIE BECKETT Medicaid coverage that deals with long term disabilities; complex medical needs; children who can live at home and are under 19 years of age. If you have private insurance then Medicaid is considered secondary.  The child's funds are a consideration. To apply, contact the Department of Health Care Finance, Division of Children's Health Services.  HealthCheck@dc.gov

Department of Health Care Finance 

1-202-442-5988


Early Intervention

Strong Start DC Early Intervention Program (DC EIP) 

 1-202-727-3665

Strong Start DC Early Intervention Program (DC EIP)  is a statewide, comprehensive, coordinated, multidisciplinary system that provides early intervention therapeutic and other services for infants and toddlers (birth through age three) with disabilities and developmental delays and their families. If you are concerned about your child, please call.

A guide through the DC Early Intervention Program


Education 

Early Stages Center

1-202-698-8037

Early Stages Center; Office of Special Education; D.C. Public Schools; 1125 New Jersey Avenue BW; Washington, D.C. 


Conservatorship 

District of Columbia Courts

1-202-879-1010

District of Columbia Courts has brochures and videos on filing for conservatorship.

DC Courts information for appointed conservators


Transition to Adult Services

DC Transition 

The Department of Disability Services (DDS) has two administrations: Rehabilitation Services Administration (RSA) and Developmental Disabilities Administration (DDA). RSA focuses on employment. DDA is responsible for the oversight and coordination of all services and supports provided to qualified persons with intellectual disabilities in the District of Columbia.

RSA Information

1-202-730-1700

Information specific to RSA and programs available through this agency. 

DDA Information

1-202-730-1700

Information specific to DDA and programs available through this agency. 


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 

The ARC of DC

1-800-433-5255

The ARC of DC  advocates for the rights and full community participation of all people with intellectual and developmental disabilities. 


Recreation

D.C. Park and Recreation 


More Parent Recommendations 

Virginia/DC IRSF Rett Syndrome Families Facebook page

Click and ask to join!