Washington
- Family Empowerment Representatives
- Treatment and Research Centers
- State Agencies & Resources
- Parent Recommended Resources
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
1-360-725-3413
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
1-800-772-1213
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.
Education
Office of Superintendent of Public Instruction (OSPI)
Visit Office of Superintendent of Public Instruction (OSPI) Website
1-360-725-6075
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.
Conservatorship
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.
Parent Recommended Resources
If you have favorite resources to share with others, please email that information and your experience to [email protected].
Therapy
Children’s Therapy Center
Visit Children’s Therapy Center Website
1-253-854-5660
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
1-866-734-2296
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.
Recreation
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
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.