Washington DC

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

Family Empowerment Representative

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

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

Department on Disability Services (DDS)

Visit Department on Disability Services (DDS) Website
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) 

Visit Department on Disability Administration (DDA) Website
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

State Medicaid

TEFRA/KATIE BECKETT Medicaid

Visit TEFRA/KATIE BECKETT Medicaid Website
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 

Visit Department of Health Care Finance Website 
1-202-442-5988

Early Intervention

Strong Start DC Early Intervention Program (DC EIP) 

Visit Strong Start DC Early Intervention Program (DC EIP) Website
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.

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.

Transition to Adult Services

DC Transition 

Visit DC Transition Website
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

Visit RSA Information Website
1-202-730-1700
Information specific to RSA and programs available through this agency.

DDA Information

Visit DDA Information Website
1-202-730-1700
Information specific to DDA and programs available through this agency.

Handicap Placard

Department of Motor Vehicles

Visit the Department of Motor Vehicles Website
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.

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

Legal Resources & Information

The ARC of DC

Visit The ARC of DC Website
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 

Visit D.C. Park and Recreation Website 

Additional Resources

Virginia/DC Rettsyndrome.org Families Facebook page

Visit the Virginia/DC Rettsyndrome.org Families Facebook page