HOUSE BILL REPORT
HB 1541
As Reported by House Committee On:
State Government & Tribal Relations
Title: An act relating to increasing access and representation in policy-making processes for people with direct lived experience.
Brief Description: Establishing the nothing about us without us act.
Sponsors: Representatives Farivar, Couture, Mena, Pollet, Taylor, Ortiz-Self, Street, Thai, Reed, Waters, Fosse, Caldier, Simmons, Davis, Alvarado, Schmidt, Ryu, Griffey, Ramel, Barnard, Orwall, Hackney, Bergquist, Walen, Berry, Tharinger, Peterson, Goodman, Volz, Eslick, Stonier, Gregerson, Riccelli, Ormsby, Kloba, Doglio, Bateman, Macri and Duerr.
Brief History:
Committee Activity:
State Government & Tribal Relations: 2/3/23, 2/10/23 [DPS].
Brief Summary of Substitute Bill
  • Implements certain membership requirements for statutory entities, defined as any multimember task force, work group, or advisory committee, that is:  (1) temporarily established by statute for the specific purpose of examining a particular issue that directly and tangibly affects a particular underrepresented population, and (2) required to report to the Legislature on that issue.
  • Requires various reports by statutory entities and the Office of Equity on the effectiveness of the membership requirements under the act, among other information.
HOUSE COMMITTEE ON STATE GOVERNMENT & TRIBAL RELATIONS
Majority Report: The substitute bill be substituted therefor and the substitute bill do pass.Signed by 4 members:Representatives Ramos, Chair; Stearns, Vice Chair; Gregerson and Mena.
Minority Report: Do not pass.Signed by 1 member:Representative Christian, Assistant Ranking Minority Member.
Minority Report: Without recommendation.Signed by 2 members:Representatives Abbarno, Ranking Minority Member; Low.
Staff: Desiree Omli (786-7105).
Background:

The phrase "nothing about us without us" is a mantra that has historically resonated with the disability rights community in advocating for full and direct participation in all decisions that impact their lives.

 

Various state entities encourage the participation of, or require the inclusion of, people with direct lived experience, individuals from underrepresented communities, and those from vulnerable populations.  For example, the Strategic Plan Advisory Group established by the Children and Youth Behavioral Health Work Group must include in its membership individuals with lived experience receiving behavioral health services or whose family members have received such services.  Additionally, Community Health Advisory Boards (Board) are required to be broadly representative of the character of the community, with the Board's composition consisting of community members with lived experience in areas such as health care access and quality, health care inequities, and social and economic sectors.  Also, the Utility Wildland Fire Prevention Advisory Committee must include two members representing historically marginalized or underrepresented communities.  Further, the Governor is required to appoint to the Criminal Justice Training Commission at least three members from historically underrepresented communities.

Summary of Substitute Bill:

Membership Requirements for Statutory Entities.

Statutory entities must fulfill certain membership requirements.  A statutory entity is any multimember task force, work group, or advisory committee, that is temporarily established by statute for the specific purpose of examining policies directly and tangibly affecting a particular underrepresented population, and that is required to report to the Legislature on that issue.  The membership of each statutory entity must include at least three individuals from underrepresented populations who have direct lived experience with the issue that the statutory entity is tasked with examining.  The entities must also reflect the diversity of people with direct lived experience with the issue being examined.

 

An "underrepresented population" is defined as a population group that is more likely to be at higher risk for disenfranchisement due to adverse socioeconomic factors, such as unemployment, high housing and transportation costs relative to income, effects of environmental harms, limited access to nutritious food and adequate health care, linguistic isolation, and other factors that may be barriers to participation in policy decision making.  A person with "direct lived experience" means a person with direct personal experience in the subject matter being addressed by the statutory entity.

 

If the membership requirements under the act require that additional members be appointed to statutory entities created on or after the effective date of this section, or to existing statutory entities for which new appointments are being made, the existing appointing authority for that statutory entity must appoint the additional members.  If there are multiple appointing authorities for the statutory entity, they may collectively choose one individual among themselves to make the appointments for any additional members or they may defer to the Office of Equity (Office) to make any necessary appointments.  The additional members must have voting authority. 

 

Educational and Informative Resources.

The Statute Law Committee must include information about membership requirements for statutory entities in the Bill Drafting Guide.

 

The Chief Clerk of the House of Representatives and the Secretary of the Senate must include in relevant training material or guidance provided to legislators or legislative staff information that:

  • describes the membership requirements for statutory entities;
  • strongly encourages the participation of people with direct lived experience in committee work sessions;
  • describes best practices for providing access to the Legislature and the types of accommodations that are available for people with direct lived experience; and
  • describes any findings made by the Office in its report due every four years on December 1, as described below.

 

Reports.

Each organization providing administrative support to a statutory entity, or the statutory entity if there is no administrative support from an organization, must report to the Office by August 30, 2024, and again by August 30, 2025, the following:

  • a brief description of the statutory entity's purpose; and 
  • information relating to the underrepresented populations directly and tangibly impacted by its work, including:
    • the number of members who are appointed to the statutory entity who have direct lived experience with the specific policy that the statutory entity is tasked with examining;
    • anonymous aggregate demographic information of statutory entity members related to disability status, age, race, gender, sexual orientation, ethnicity, and geographic representation;
    • an analysis of whether the membership requirements under the act reduced barriers to participation in policymaking decisions by members of underrepresented populations;
    • an analysis of how participation by members from underrepresented populations with direct lived experience affected the conduct and outcomes of the statutory entity as it accomplished its mission; and
    • the number of members from an underrepresented population who have direct lived experience and qualify for the existing statutory stipend of $200 per day, the number of those who requested stipends, and the number who received the stipend.

 

The Office must analyze the information provided to it by statutory entities and provide the Governor and Legislature, by December 1, 2025, with:

  • an overall evaluation of the process relating to membership requirements for statutory entities;
  • recommendations for improving the membership process; 
  • recommendations to further decrease barriers to participation; and
  • recommendations to increase the diversity of statutory entity applicants.

 

By December 1, 2023, and every four years thereafter, the Office must consult with community-based organizations, and may consult with state agencies or offices that support the participation of underrepresented populations in policymaking processes, to identify and report to the Legislature on:

  • barriers to access and meaningful participation by people from underrepresented populations who have direct lived experience in stakeholder engagement conducted by members of the Legislature, legislative standing committees, and statutory entities;
  • tools to support access and meaningful participation in stakeholder engagement; 
  • modifications to the stakeholder engagement processes that would promote an increase in access and opportunities for participation in policymaking processes; and
  • any recommended changes to rules or the law that would promote increased access and participation to the policymaking process.
Substitute Bill Compared to Original Bill:

The substitute bill narrows the definition of "statutory entity" to only include multimember task forces, work groups, and advisory committees that are temporarily established by statute for the specific purpose of examining a particular issue impacting underrepresented populations and required to report to the Legislature on that issue.

 

The membership requirement for statutory entities is modified by removing the requirement to include a specified number of members from underrepresented populations depending on the number of those communities impacted by the issue being examined by the statutory entity, and instead requires that statutory entities must include as members at least three individuals from underrepresented populations who have direct lived experience with the issue being examined.

 

The appointing authority for any additional members needing to be appointed to statutory entities, in compliance with requirements under the act, is changed from the Office to the appointing authority for the statutory entity originally formed.  If there are multiple appointing authorities for the same statutory entity, then the appointing authorities may collectively defer appointment of any additional members to one of the appointing authorities or to the Office.

 

The party responsible for submitting the August 30, 2024, and August 30, 2025, reports to the Office is changed from each statutory entity to each entity providing administrative support to that statutory entity; or, if there is none, the statutory entity will submit the report.

Appropriation: None.
Fiscal Note: Preliminary fiscal note available.  New fiscal note requested on February 13, 2023.
Effective Date of Substitute Bill: The bill takes effect 90 days after adjournment of the session in which the bill is passed.
Staff Summary of Public Testimony:

(In support) The conversation around this policy began three years ago and was led with self-advocates from the disability rights community who were left out of the decision-making process about a policy that directly impacted them.  As the conversation continued, advocates realized that while this movement started as a disability rights issue, meaningful engagement is important to all populations with direct lived experience in all walks of life. 
 
Although entities may have the best intentions when it comes to finding solutions to problems, meaningful engagement doesn't always happen.  At times participation is merely a box that is checked and resources necessary for proper access are not provided.  Other times, people are left out of the conversation entirely.  However, when those with direct lived experience are given proper access to participate in policy making decisions and the change to be involved in formalizing the recommendations of an entity rather than being limited to merely providing feedback, assumptions are challenged, myths are dispelled, others are better informed and more educated about the issue, and most of all, better and cheaper long-lasting solutions are found.  Technical experience and knowledge learned from holding a higher education degree does not replace the experience, wisdom, and lessons learned of those who have direct experience with a particular issue.  Marginalized communities are experts in their own lives and know what they need to thrive, whether that is in the areas of education, homelessness and housing, mental health, food security, transportation access, criminal justice, child support, government assistance programs, or other areas.
 
When people with direct lived experience are not involved in decisions that directly impact their lives, it leads to policies or practices that do not actually do anything to solve the root cause of the problem and in some cases, it could lead to discriminatory policies or practices, making the situation worse.  Involving people with direct lived experience in decisions that impact their lives is the only way policy makers will know whether their solutions work.
 
The requirements in this act are a cultural shift, and things are not perfect the first time around when there is such a big cultural shift, but this is a good place to start.  This act is not meant to restrict the participation of members, but to increase participation from people who are the most marginalized in our communities.  The government has a valuable resource at their fingertips—constituents with direct lived experience in the issues it is trying to solve.  If the government took this human-centered approach and involved these constituents more in decision making, it would lead to a government that is more representative, accountable, and responsive to the citizens it serves.  Democracy demands that those who are most impacted have a seat at the table.  When people are engaged, they can achieve more success.

 

(Opposed) None. 
 
(Other) Not all people with direct lived experiences can participate in the same way.  A person with intellectual and developmental disabilities may not be able to adequately convey their experience.  In this circumstance, caregivers often know the direct lived experiences of those they care for the best because they go through the barriers and obstacles with them, oftentimes giving caregivers direct lived experience in a particular issue.  Legal representatives who support those with complex needs need a seat at the table.

Persons Testifying: (In support) Representative Darya Farivar, prime sponsor; Jessica Renner, Self Advocates in Leadership; Samantha Fogg, Seattle Council Parent Teacher Student Associations; Ivanova Smith, People First of Washington; Kyle Matheson; Shawn Latham, Allies in Advocacy; Eric Matthes, The Arc of King County; Jordan Landry; Amy Roark; Carol Sullivan, League of Women Voters of Washington; Kristin DiBiase, Governor's Committee on Disability Issues and Employment; Craig Sicilia and Mike Raymond, NorthStar Project; Michele Kauffman; Sunshine Cheng, Disability Rights Washington; William Kinyon; Duaa-Rahemaah Willams, Resident Action Project and the Washington Low Income Housing Alliance; Gabby Fitz, Communities for Our Colleges; Tracy Turner; and Robert M. Wardell.
(Other) Lloyd Baker, Action DD.
Persons Signed In To Testify But Not Testifying: None.