Washington Resources

Family Empowerment Representatives  | Treatment and Research Centers | WA State Agencies | Parent Recommendations


 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.

Brittney Gibson, Rettsyndrome.org  bgibson@rettsyndrome.org  1-800-818-7388


Treatment and Research Centers


Clinics & Clinical Trials

Please contact the trial site for current enrollment status.

Experiences of Parents of Children with Special Needs/Disabilities Study

This Study will explore the experiences of parents of children with special needs/disabilities from a multicultural perspective. This study will help foster positive change towards the design and use of culturally-sensitive services. Participation consists of taking a confidential 20-minute online survey. Upon completion of the survey, participants will be eligible to enter a  raffle for one of three $100 gift cards to Amazon. Contact Erin Okumoto e.okumoto@email.wsu.edu


 State Agencies - Washington


Local Service Agencies

Local DDA Office

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)

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

This page has answers to many frequently asked questions regarding how to access disability support services.

Individual Family Services Program (IFS)

IFS provides 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.


Handicap Placard

Washington State Department of Licensing

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.


State Medicaid 

Apply for Medicaid

The DSHS can help you apply for Medicaid.

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 

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

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

Basic Plus Waiver

This waiver provides services to persons with developmental delays or disability at any age

Washington Apple Health

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.


Early Intervention

Early Support for Infants and Toddlers (ESIT)

1-360-725-3500

The Department of Early Learning's ESIT program provides services for children from birth to age three who have developmental delays or disabilities. Contact the Local Lead Agency in your county for more information.

Local Lead Agency Contact Directory


Education

Office of Superintendent of Public Instruction (OSPI)

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

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

 Washington Law Help provides information on guardianship in Washington.


Transition to Adult Services

Office of the Superintendent of Public Instruction

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.


Parent Recommendations

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


 Medical Professionals

ClinicalTrials.gov

This site has a comprehensive listing of clinical studies involving Rett Syndrome patients or families.


Therapy ( PT, OT, Speech, Hippotherapy and Aquatherapy)

Children’s Therapy Center

&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

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.  

Innovative Services NW

1-360-892-5142

Innovative Services Pediatric Aquatic therapy is designed to introduce children to safe fun in the water. 

 


Legal Resources


Recreation

Wheelchair Accessible Trails

Wild Waves Theme Park


More Parent Recommendations

Northwest Rett Syndrome Foundation Facebook

This page is private, click and ask to join.

Care Lookup

Care Lookup provides a list of durable equipment vendors in Washington. Check with your private insurance company, as they may have preferred providers that offer better coverage than a non-preferred provider.

Home Care Referral Registry

This registry matches Washington residents who receive publicly funded in-home care with prequalified home workers.  Applications are by county.