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, International Rett Syndrome Foundation
[email protected] 1-913-221-8157
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
Developmental Disabilities Administration
The Developmental Disabilities Administration assists individuals with developmental disabilities and their families to obtain services and supports. Case Resource Managers are assigned through your local DDA office to assist clients in identifying support needs and accessing DDA services and/or other community resources.
Disability Determination Services (DDS)
DSHS Disability Support Page
Individual & Family Services Waiver (IFS)
Visit Individual & Family Services Waiver (IFS) Website
IFS provide support services for children beginning at age 3 with no maximum age. To receive services, an assessment must be performed to determine level of need.
Individual and Family Service Waiver
The Individual and Family Service Waiver for Washington is the equivalent of the K Plan in Oregon. It may help you with respite, resources, supplies and more. There is no wait list and no income-based eligibility for these services.
Children's Intensive and Behavioral Support Waiver
Basic Plus Waiver
The ARC of Washington State
The ARC has information on conservatorship (known as Guardianship in Washington State). It 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. Check with your child’s high school and/or your county Superior Court Probate Office for information on Self Help Clinics. This process should start approximately 6 months before the 18th birthday.
Transition to Adult Services
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Children’s Therapy Center
This center has a comprehensive, nonprofit, pediatric therapy program. They provide essential services and products for children with special needs including physical, occupational and speech therapy, early intervention services, orthotics and equipment.
Northwest Rett Syndrome Association
Visit Northwest Rett Syndrome Association Website
Improving the lives of individuals and families affected by Rett Syndrome in the Pacific Northwest