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.

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

Developmental Disabilities Administration

Visit Local DDA Office Website
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)

Visit Disability Determination Services (DDS) Website
The DDS determines eligibility for three disability programs: Social Security Disability Insurance (SSDI), Supplemental Security Income (SSI), and Non-Grant Medical Assistance (NGMA).

DSHS Disability Support Page

Visit DSHS Disability Support Page Website
This page has answers to many frequently asked questions regarding how to access disability support services.

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.

State Medicaid

Apply for Medicaid

Visit Apply for Medicaid Website
The DSHS can help you apply for Medicaid.

Individual and Family Service Waiver

Visit Individual and Family Service Waiver Website
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 

Visit Children’s Intensive and Behavioral Support Waiver Website
This waiver provides a variety of services, such as respite, physical therapy, occupational therapy, vehicle modifications, and behavior management services, for children ages 8 – 20.

CORE Waiver

Visit CORE Waiver Website
This waiver can provide community access and services beginning from birth with no maximum age.

Basic Plus Waiver

Visit Basic Plus Waiver Website
This waiver provides services to persons with developmental delays or disability at any age.

Washington Apple Health

Visit Washington Apple Health Website
Medicaid in Washington is called Washington Apple Health. They offer a variety of services, including durable medical equipment. The application can be completed online, and you will receive a response right away.


Office of Superintendent of Public Instruction (OSPI)

Visit Office of Superintendent of Public Instruction (OSPI) Website
OSPI fulfills the requirements of the federal Individuals With Disabilities Education Act (IDEA), which ensures that all children with disabilities have access to a free and appropriate public education.


The ARC of Washington State

Visit The ARC of Washington State Website
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.

Washington Law Help

Visit Washington Law Help Website
Washington Law Help provides information on guardianship in Washington.

Transition to Adult Services

Office of the Superintendent of Public Instruction

Visit Office of the Superintendent of Public Instruction Website
The office of the Superintendent of Public Instruction has transition resources for individuals who have graduated from high school, or “aged out” of public schools.

Handicap Placard

Washington State Department of Licensing

Visit Washington State Department of Licensing Website
Washington State Department of Licensing the DOL issues disabled parking placards and plates. Applications are available online and can be mailed to your local office.  Must be signed by a physician and accompanied by the appropriate fees.

If you have favorite resources to share with others, please email that information and your experience to [email protected].


Children’s Therapy Center

Visit Children’s Therapy Center Website
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.

Rehab Without Walls

Visit Rehab Without Walls Website
Rehab Without Walls is a Seattle-based pediatric outpatient rehabilitation program that provides innovative, high-intensity, one-to-one services to children with a wide range of neurological disorders.


Wheelchair Accessible Trails

View Wheelchair Accessible Trails

Additional Resources

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

Visit Northwest Rett Syndrome Association Facebook

Home Care Referral Registry

Visit Home Care Referral Registry Website
This registry matches Washington residents who receive publicly funded in-home care with prequalified home workers.  Applications are by county.