Navigating the System


Welcome, Parent Providers and families of SEIU 775’s Caregiver Community!

We belong to a large community of providers and a network of systems designed to support us and the individuals we care for throughout our lives.  These systems are complex and can be complicated to use, but there are people working to support us every day. Finding those people and that support is the goal of this SEIU 775 Parent Provider and Family Resource Guide.

Marian Jones Curran JonesIt’s a guide created by us parents and families, for parents and families. It is specifically aimed at our needs. It is dynamic and ever-changing; so please click here to contact us when you find valuable information to include, or have a need you would like us to track down. When you give us your feedback, you’re helping this guide grow with our community.

Our community is so much more — we will always be working to support each other as we grow.  Whether we’re sharing information and help, attending social events together, or working on legislation to help our families, we’re always here for each other.

In 2017, we came together in meetings across the state, held our second annual Parent Provider Summit, and passed legislation helping make respite care more accessible.

In 2018, we held our third annual Parent Provider Summit and we’re working together to reform and streamline the complicated, expensive guardianship process.  We’re lobbying for families facing decisions about guardianship or other important legal relationship changes, and to strengthen the rights and protections of persons in our care.

If the guardianship process has affected your life, please click here so we can contact you about sharing your story.   Together, we’re telling our stories about the guardianship dilemmas families face. Sharing our stories is one way we can help each other.

Every Parent Provider and family member is an important part of our community.  We’ll be emailing you every month, with updates and additional resources.



The Arc of Washington
The Arc of Washington develops services and programs for people with intellectual and developmental disabilities (I/DD).  They advocate for DD rights, connect families, influence public policy, increase public awareness, and inspire inclusion through nine local chapters.  The Arc of Washington serves all ages of people with I/DD.  In addition, Arc distributes newsletters on important legislative issues impacting our families and on their network of donations for families in need.

Informing Families (a resource of the Developmental Disabilities Council)
Whether you’re just beginning to get a sense of the adult-services system or you’re well-traveled and somewhat weary, you need information.  It’s important to stay informed about changes in programs and eligibility requirements.  This site provides a wide range of  up-to-date and important information.  You can also sign up to receive their quarterly newsletter.

Social Security Administration
The Supplemental Security Income (SSI) program pays benefits to adults with disabilities who have limited income and resources. When applying, have receipts of your son’s or daughter’s share of rent and utilities.  Social Security Disability Insurance (SSDI) may also be available.  Each program has its own eligibility requirements and benefit levels; eligibility depends on severity of disability.

Apply online:

Apply by phone: 1-800-772-1213 from 7 a.m. to 7 p.m. Monday through Friday.  TTY is available at 1-800-325-0778.

Apply in person: Visit your local Social Security office (call first to make an appointment).  Click here to find your nearest Social Security office.


In Washington, a major provider of services and supports for people with disabilities is the Department of Social and Health Services (DSHS).  Under this department, there are numerous agencies that provide support to people with disabilities, such as employment, places to live, ways to pay for food, and healthcare coverage. 

Agencies in the Department of Social and Health Services (DSHS)

_X9A9458• Developmental Disabilities Administration (DDA)
Formerly known as the Department of Developmental Disabilities, DDA offers a wide range of services and supports for people with developmental disabilities and their families.  Many services become available at age 18, but families can complete the DDA application process at any time to be assigned a case manager. DDA resources include conducting assessments to determine care needs and contacting caregivers.  DDA also provides assistance in accessing community and leisure activities, residential options ranging from minimal support to 24-hour care, family support through respite care, and therapeutic services.

  • Division of Vocational Rehabilitation (DVR)
    DVR works to help people with disabilities achieve a greater quality of life by helping them find employment.  They offer vocational assessment and counseling, and rehabilitation planning and services.  Assistance is available after you have completed the DDA application process.  This agency also provides an Independent Living Program (ILP) designed for people with disabilities who want to increase their independence.  The ILP may assist with attendant care management, counseling and advocacy, living arrangements, and skills training.
  • Aging and Long-Term Support Administration (ALTSA)
    Finding care can seem complicated and even overwhelming when you first start looking. The key is to find knowledgeable people who can help you. The information included here can help you sort through what you need to know.  ALTSA offers community-based residential resources focused on helping people to stay in their homes, plus monitoring for individuals who cannot remain in their homes.  In-home care includes help obtaining appropriate medical and physical care, core services, and access to respite care.  ALTSA also provides assistance with adult-family-home placement.
  • Reporting Adult Abuse
    Once you contract with DSHS to provide personal care for any vulnerable adult, you become a Mandatory Reporter and by law you MUST report if there is reason to believe abuse, abandonment, neglect or financial exploitation of a vulnerable adult has occurred. All reports are screened by Adult Protective Services and/or Residential Care Services. If the person is in immediate danger, call 911. You do not need proof to report suspected abuse and you do not need to give your name.
  • Economic Services Administration (ESA)
    ESA offers monthly grants or assistance for basic living requirements, medical and food needs, plus help with employment-referral services, job training and placement resources.
  • Department of Services for the Blind (DSB)
    DSB provides training for adults and children who are blind or have low vision.  DSB can assist families and young people as they transition from high school into vocational rehabilitation services, including exploring vocational options, adaptive skill training,  academic and vocational tuition assistance, job development, and employment accommodation.



  • Office of Developmental Disabilities Ombuds
    The DD Ombuds is an independent, private program — created by the Washington Legislature — where you can go when you have a complaint or concern.  This program promotes the well-being of people receiving developmental disability services and investigates individual concerns. The Ombuds focuses on resolving issues at the lowest level possible through individual complaint resolution. They also provide monitoring, information on rights and responsibilities, and recommendations for changes in policy and procedures to the government.

  • WA Employment Security Department (ESD)
    ESD’s services — including employment and training programs, and job-placement services — are available to Washington residents with disabilities.
  • Community and Technical Colleges
    Washington’s community and technical colleges offer technical education and skills training, for entry into careers requiring less than a bachelor’s degree.  These colleges also have Disability Support Services Councils that serve students with disabilities.



Peer-support groups and additional advocacy organizations

  • Self-Advocates in Leadership (SAIL)
    SAIL is a statewide coalition of people with developmental disabilities.  Anyone with a disability is invited to their meetings in SeaTac (on the second Tuesday of every month).  They offer information and assistance needed for individuals to speak up and be heard in state government.
  • People First of Washington
    People First is one of the top self-advocacy organizations in the United States. They live by the motto, “We are people first, our disabilities are secondary!”  They meet locally and have numerous resources focusing on self-advocacy, leadership and fundraising.

Healthcare providers and other resource websites

_X9A9305• Community Living Connections
This is another website where Washington residents can find a full range of private and public long-term-support options. Whether you are looking for help for yourself or for a loved one, this site  makes it easier to locate services that best fit your needs.

• Washington Apple Health
This is where you go to choose your child’s or family member’s healthcare provider for the breadth of health services covered by Apple Health, Washington State’s Medicaid program.

• DDA’s links to medical resource and advocacy organizations
This website offers a wide range of organizations and specific medical resources for people with intellectual and developmental disabilities.

Dental care for persons with disabilities 

  • The Washington State Dental Association
    This site includes a directory of dentists treating patients with developmental disabilities or special needs.
  • The University of Washington School of Dentistry
    This resource is part of UW’s teaching program, which provides dental care that is not otherwise available for patients with developmental and acquired disabilities.


With so much on our plates, it’s easy to let important financial planning and legal issues slip by or be put off for another day; these three websites offer information that can make this work a little easier.

  • Social Security Options
    When you apply for YOUR Social Security retirement benefits, be sure to name your son or daughter — as a disabled adult — on your application.  If you have already filed for benefits, contact the Medicare Reimbursement Program (see below) and ask them to add your child on your application.

Including your child on your Social Security application allows him or her to draw Social Security DAC (Disabled Adult Child) benefits based on your record.  He or she will also be entitled to Medicare 24 months after your Social Security benefits begin. Your child’s DAC benefit in no way affects your benefits or the amount you will receive, but has the potential to increase their monthly income and allow for expanded medical coverage under Medicare.

For more information on these Social Security options contact:
Kristina M. Bachmann, Medicare Reimbursement Program Manager
Phone: (360) 829-4934
Email: OR

  • Developmental Disabilities Endowment Trust Fund
    IMG_4836Making an informed decision about any kind of financial planning is good for everyone, but when it comes to individuals with intellectual or developmental disabilities who receive government benefits, it’s even more important to understand how to invest in the future while ensuring eligibility for vital services and benefits.  This fund helps you provide for your family member today and in the future.
  • Aging and Long-Term Support Administration‘s Legal Planning Tips
    The ALTSA website is a great starting point for many legal decisions and directives.  Information here can help people with intellectual or developmental disabilities think through and communicate what they want to happen if medical decisions have to be made and they can’t communicate their wishes, become incapacitated, or pass away.

Legal Advocacy and Services 

  • Disability Rights Washington
    Disability Rights provides legal services for persons whose disability rights have been violated. They also offer general information about legal rights, community education and training.
  • Washington Law Help
    For people with low incomes,
    Washington Law Help provides free legal assistance on issues ranging from power of attorney, to healthcare directives, basic healthcare rights, and health insurance.
  • National Guardianship Association
    The National Guardianship Association provides information and resources on concerns of guardians and families.  This important issue is at the forefront of our legislative agenda.  In 2018, we’ve lobbied hard for a new state law to provide assistance to families facing decisions about guardianship or other important legal relationship changes, and to further strengthen the rights and protections of persons needing guardianship.

Savings Plan for Persons with Disabilities

  • Washington State ABLE Program
    The Washington State ABLE Program was created to help disabled individuals maintain their financial eligibility for Medicaid, Supplemental Security Income (SSI), and other key federal benefits, while also setting aside money in tax-sheltered accounts for education, job training, assistive technology, transportation, and other needs.  Up to $14,000 per year of their personal funds can be invested.


A Helpful Resource on Federal Laws

Go to this website to get a detailed government summary of most federal laws impacting persons with disabilities: 

Go to these websites to review two very important laws covering the rights of people with disabilities:

Klennerts_smaller MBThe Americans with Disabilities Act of 1990 (ADA)
The ADA is a civil-rights law that prohibits discrimination against and requires accommodation for individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the public.

The Rehabilitation Act of 1973 (amendments of 1974, 1986, 1992, 1993 & 1998)
The Rehabilitation Act prohibits discrimination based on disability in programs conducted by federal agencies, in programs receiving federal financial assistance, in federal employment, and in the employment practices of federal contractors. 



ABLE                            Achieving a Better (financial) Life Experience (State of WA)

ADA                              The Americans with Disabilities Act (federal)

ALTSA                          Aging and Long-Term Support Administration (State of WA)

Apple Health             Washington’s Medicaid program (State of WA)

Arc                                 National advocacy and resource organization for people with disabilities (non-profit)

DD Ombuds                Office of Developmental Disabilities Ombuds (non-profit)

DSB                                Department of Services for the Blind (State of WA)

DDA                               Developmental Disabilities Administration (State of WA)

DDC                               Developmental Disability Council (State of WA)

DDETF                          Developmental Disabilities Endowment Trust Fund (State of WA)

DSHA                             Department of Social and Health Services (State of WA)

DVR                                Division of Vocational Rehabilitation (State of WA)

ESA                                 Economic Services Administration (State of WA)


ESD                                 Employment Security Department (State of WA)

HCBS                              Home and Community Based Services (federal)

Informing Families   Resource of the Developmental Disabilities Council (State of WA)

People First                  National self-advocacy organization with WA chapter (non-profit)

SAIL                                 Statewide coalition of people with developmental disabilities (non-profit)

SSA                                   Social Security Administration (federal)

SSDI                                 Social Security Disability Insurance (federal)

 SSI                                    Supplemental Security Income (federal)

WSDA                              Washington State Dental Association (non-profit)

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