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.
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:
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:
The Office must analyze the information provided to it by statutory entities and provide the Governor and Legislature, by December 1, 2025, with:
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:
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.
(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.
The second substitute bill:
(In support) The bill is a culmination of three years of hard work. The goal of the bill is to include individuals who are directly impacted the most by government policies in the decision-making process, because people with direct lived experience can provide firsthand knowledge of what works and what does not work. The bill aligns with the Governor's commitment to ensure that those who have been historically and systematically excluded from policies that impact them the most are included. This act provides an avenue for holding agencies accountable for ensuring that inclusion and equity are woven into their work. The Office of Equity would be providing tools and resources to help state government to do this work well. Each Washington resident should have full access to opportunities and resources they need to live the best life possible. The original cost of the bill was $3.5 million, and it has since been reduced to under $1 million.
(Opposed) The bill is in violation of Article 1, section 12 of the state Constitution which prohibits special privileges and immunities. The act creates a special door that only certain people can use to gain access to decision-making bodies that consider important matters. This fosters more division in communities instead of building a better foundation for all Washingtonians.