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
[email protected] 1-913-221-8157
Family Empowerment Representative
Ann-Marie Kinzler, volunteer Family Empowerment Representative
[email protected] 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.
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
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.
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, [email protected].
Department of Health Care Finance
Visit Department of Health Care Finance Website
Strong Start DC Early Intervention Program (DC EIP)
Visit Strong Start DC Early Intervention Program (DC EIP) Website
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.
Early Stages Center
Early Stages Center; Office of Special Education; D.C. Public Schools; 1125 New Jersey Avenue BW; Washington, D.C.
Transition to Adult Services
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.
Visit RSA Information Website
Information specific to RSA and programs available through this agency.
Visit DDA Information Website
Information specific to DDA and programs available through this agency.
Department of Motor Vehicles
Visit the Department of Motor Vehicles Website
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, [email protected].
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Legal Resources & Information
The ARC of DC
Visit The ARC of DC Website
The ARC of DC advocates for the rights and full community participation of all people with intellectual and developmental disabilities.