Sunday, February 5, 2023

Inclusion Or Tokenism? Response to Washington State's Attempt to Legally Codify Lived Experience Inclusion

Recently a colleague sent me the text of a proposed state legislature bill in Washington State with a stated purpose of increasing access and representation in policy-making processes for people with direct lived experience. And asked me for my thoughts.

Here is the link to the text of bill - HB 1541

I'll admit I haven't done a thorough deep dive yet (and if any group in Washington State wants to pay me to do that, I'm right here and open for business). This is a first initial impression without talking to the people who drafted this or to the stakeholders in the state itself.

Here's a brief rundown of the main core aspect of the bill. The major legal change is that the bill calls for lived experience representation on any statutorily created (i.e. a state legislature bill requires such a group to be formed) or statutorily mandated multimember task force, work group, advisory committee, board, commission, council, or other similar entity tasked with examining policies or issues that directly and tangibly affect historically underrepresented communities.

If two or fewer underrepresented populations are directly and tangibly affected by the specific issue or issues that the statutory entity is tasked with examining, at least two representatives from each directly impacted underrepresented population must be appointed to the statutory entity.

If there are three or more underrepresented populations directly and tangibly affected by the specific issue or issues that the statutory entity is tasked with examining, at least one person representing each directly impacted underrepresented population must be appointed to the statutory entity.

There are some other parts of the bill but for now this article will focus primarily on this component. 

My Thoughts and Concerns 

1) Token Representation

It's nice to see the bill calling for more that just one token individual, but these government committee are usually in the rage of 10-30 members. Only protected 2-6 or so of those slots is not true empowerment for Expert by Experience (EBE) perspective. It is terrifying when 80% of the room is often against you to begin with and you're only 20%, with no guarantee that anything you say has to be respected or truly listened to.

Yes, the bill also has language aspirationally asking for the lived experience voice to be centered and prioritized, but there's no legal protection for enforcing that aspect in the bill. 

True leadership would be centering lived experience as the empowered discussion leader, not just the one or two chairs in the corner. As one example, included below is a case study of a recent Washington government committee with only 20% Expert by Experience representation and a vast amount of what I and my peers would strongly disagree with as policy recommendations. I don't know the five EBE members or anyone else directly involved. It is just my initial outside analysis. 

I would love to keep developing more such case studies with more structured formal analysis and direct input from involved stakeholders and lack the support and funding of the broader behavioral health community to pursue such work. 

2) Government Committee and Working Group Reports Often Don't Guarantee Accountability For Further Change

We have so, so many examples of the hundred page government report that did little to actually on-the-ground shifts in resource allocation, policy, cultural opinion, etc. Sometimes they do help, but it's something to note. 

3) Who's Payed For This Work and Who Isn't

Committees are labor. For government employees, such participation counts as part of their salaried job duties. For researchers and professionals, participation falls short of that, but they at least typically have salaried jobs that provide middle class or higher lifestyles. The Expert by Experience does this labor also for free, often while living in poverty conditions. It's laughably and profoundly inequitable for some people to get paid to be there as part of their job while asking those with the least to contribute without pay.

4) No Guarantee Lived Experience Input Will Be Respected 

The bill, in the introduction, mentions that.. 

"People with direct lived experience with a particular issue are experts in their own lives and experience and are best equipped to find solutions to those issues. The legislature finds that when underrepresented populations are included in policy decision making around issues that directly affect them, the solutions put forward make a greater positive impact on those it seeks to help."

What the bill seems to fail to recognize is that there's a difference and a risk between true, respectful, co-creative inclusion (which does often result in greater positive impact), and disrespectful inclusion. As detailed in this report about peer support staff in medical settings, research finds that peer staff feel ostracized and poorly treated by non-peer staff. A recent study explicitly found that peer staff working in traditional treatment agencies are “co-opted,” reporting that the employment and supervisory circumstances of peer staff “can reasonably be construed as a powerful force encouraging acculturation into the cultures of the treatment organizations in which they work." Acculturation is a term meaning assimilation into to a different culture, typically the dominant one. Meaning that peers are forced to adopt the views and methods of the prevailing status quo. Thereby doing the exact opposite of the stated attempt - adopting some or most of the solutions brought forward by the views (and culture) of the peers themselves.

Final Initial Thoughts

I appreciate the underlying attempt here but still feel like this does far too little, and makes me wonder how much Expert by Experience consultation was done in drafting the report itself. 

To be not wholly negative, I do hope if this passes that maybe it can serve as an aspirational signal that perhaps prompts some true respect and cultural change toward true empowerment of Expert by Experience perspective. Perhaps some of the peer input provided by these individuals will actually being acted upon and put in place. That being said, I have rightful and evidence-based reason to worry that this does very little except codify tokenism as legal state policy. Is that any better that outright full exclusion? It almost feels worse, as it gives the performative veneer of appearing like inclusion has occurred, while in truth falling vastly short of the true inclusivity, empowerment, and accountability needed. 

As the report says, as potential system designers, the actual service users have the most important perspective. We are still not empowered to utilize that perspective, and I'm sad to say, despite what might be good intent, I don't see this legislation directly getting us any closer toward that goal.

Case Study of Lived Experience (Expert by Experience) on a WA Government Steering Committee

Given the proposed representation totals in the legislation, we can ask - will such work representation totals serve to advance peer policy preferences? One recent example we can look at is Washington's State Substance Use Recovery Services Advisory Committee (SURSAC). Here is brief context for the formation of the committee (source)...

"In April 2021, the state Supreme Court rejected a request from the state to reconsider its Blake ruling. Later that month, the Legislature passed Senate Bill 5476, reclassifying drug possession as a gross misdemeanor with fines up to $125. Per the bill, first and second-time convictions that occurred before the Blake ruling would be vacated in retrial and defendants referred to treatment programs.

The legislation also created the Substance Use Recovery Services Advisory Committee (SURSAC), also known as the Blake Committee, tasked with creating a plan for the 2023 legislative session."

Was Lived Experience Perspective Represented? Was in Centered?

This is exactly the kind of panel HB 1541 is targeting. Who is on this panel? In the references section below one can find a full list and how I chose to classify committee members. By my count, out of 25 members, the committee representation is...

Government (14)

Corporations (1)

Practitioners/Researchers (5)

Expert by Experience (5)

We can thus see that lived experience makes up only 20% of the voice in the room, versus 80% not Expert by Experience. Near as I can tell, this would also count as what HB 1541 considers to be sufficient representation. We can note that if such a committee chooses to use majority vote to pass a recommendation, the Expert by Experience contingent would need to swing a full 30% of the room that's not they themselves to get a vote passed.

 This looks, to me, like nothing less than pure tokenism. The one chair in the corner so the committee can say we, the Experts by Experience (EBE), were there, while still not possessing true power. Not being centered. Not leading the effort. 

I say that based on the experience of myself and dozens of colleagues and hundreds of committees with similar representation percentages or lower. Maybe this committee truly let their five EBE's lead, but countless examples have shown this isn't likely.

This is not the EBE people "leading".

What Does the Report Outcome Look Like?

SURSAC released their final report in December of 2022 (link to the report)

Similar to my discussion of HB 1541, this article is limited to rough initial thoughts from solely myself. I do have the capacity or resources to perform more exhaustive analysis, and would be happy to work with partners interested in investing in such analysis.

Here are some rough thoughts.

1) Rhetoric insisting that existing services are definitely and always helpful. No report of the harms and failures that occur when reaching out.

Recommendation 10 of the report mentions "The SURSA Committee recommends continued and increased investments in evidence-based diversion programs".

This completely fails to ask or acknowledge the many Expert by Experience critiques of how evidence is created in the health services. As was documented in a January 2023 National Institutes of Health report on ableism in research...

"Although 27% of U.S. adults live with a disability, only 10% of science, engineering, and health doctorate holders, and less than 2% of researchers funded by the National Institutes of Health, report having a disability. Inclusion is even lower among professionals with disabilities from underrepresented racial or ethnic groups in science, technology, engineering, mathematics, and medicine fields."

We know current programs are failing. Not always. But sometimes. And yet reports like SURSA continue to fail to acknowledge this and instead insist that help is definitely out there. I am continuing to work to show how and why that is a partly false narrative, and an early draft exploring that topic can be found here...

Article Link: The Hard Truth Of When We, Sometimes, Can Do Almost Nothing To Help

2) Rhetoric that services are "appropriate" - Health Hubs

Within recommendation 10, we see a recommendation stating these services should be made available in all regions as well...

ASAM-alternative SUD Assessments for youth and adults

• Syringe service programs for youth and adults

• Health Hubs for youth and adults who use drugs

• Detox/withdrawal management for youth and adults

• MOUD for youth and adults

• Outpatient treatment for youth and adults

• Ensure that long-term harm reduction-supported case management is available

One question I had is - what's a health hub? This is a policy that committee member Dr. Caleb Banta-Green, a researcher at University of Washington (UW), has publicly championed numerous times, including this op-ed article which was also referenced in a UW press release. Linking to press release as actual article is behind a pay wall.

Substance Use is a Health Issue, Not a Legal One – Op-Ed in the Seattle Times by Dr. Caleb Banta-Green

Press release quote: "A priority recommendation from SURSA is the creation of health hubs for people who use drugs referred by the newly created recovery navigator or other established programs"

This article used this link to define health hubs...

Drug User Health Hubs

From which this quote is of interest...

"The Drug User Health Hubs are expected to improve the availability and accessibility of an array of appropriate health, mental health, and medication assisted treatment services for people who use drugs, especially but not solely injection drug users (IDUs)."

Critical questions include...

1) Who decided what "appropriate" is? 

As myself and many in the disability rights and mad justice movement have noted for decades, our community has been locked out from that discussion and determination, leading to a profound and ongoing system of entrenched ableism.

2) Insistence on the treatment paradigm

This is yet another explicit reinforcement of the medical model over the disability model. Even though parts of the SURSAC report reference social determinants of heath at times, including a couple attempts at policy recommendations toward that end, it is clear that the bulk of the report is still heavily biased toward the medical model of "fix the individual" and "force the individual to comply with existing systems" while placing no true accountability on systems and external factors to themselves adjust to serve the citizen in need. 

3) Analysis of Hub and Spokes 2018 Model Championed by Committee Chair Michael Langer 

It's important to note that SURSA is chaired not by a lived experience advocate, but by a longtime government employee. They may or may not have lived experience themselves. But note that it's not the external Expert by Experience who is given the seat of power in the committee. At best, the chair takes a backseat, facilitator role who's job is to center lived experience. There is no protection for that under HB 1541.

For a look at the perspective Langer might bring to the table, we can look back to Washington's 2018 SUDS policy utilizing the "hub and spokes" approach. Michael Langer was office chief with the DSHS Behavior Health and Recovery Division at the time, and is quoted in this WA Governor’s Office overview article: 

What are hubs and spokes and how can they help fight the opioid epidemic?

Relevant quote:"The hub-and-spoke program is about networking, and it gets its name from the way it creates a help network within a specific community. There is a hub, which is a facility where staff are certified to administer addiction-treatment drugs such as Suboxone, and there are a variety of nearby spokes, which are other places a person might find help for opioid use disorder. Spokes within a community could include a residential treatment facility, a therapist’s office, drug court, a tribal medical facility or an emergency room, for instance."

As I read that passage, I note how all the spokes are not-designed-by-service-user approaches that are steeped in the medical model. There's no mention of peer support. No mention of advocating to fix social determinant of health issues. No lived experience input.  

It's exactly the kind of program that we'd hope HB 1541 starts to fix, but I've seen little to no acknowledgement that Washington State government truly understands why many Expert by Experience advocates are critics of much of what that quote about what Langer thought spokes should be at the time. 

I'm worried he and the rest of the community still don't understand. HB 1541 calls for training, but with zero true enforcement on who will train these individuals, and zero accountability for showing they've truly come to understand the ongoing harm lack of Expert by Experience inclusion has caused. 

Concluding Thoughts

All told, and to be clear I haven't gone through every policy recommendation in detail, but after a first dive into some of this I see an astounding amount of the same harmful paradigms demanding that we "fix the individual" and "adapt them to current systems", which is sometimes helpful and at worst harmful and abusive. 

I see no acknowledgement of past and ongoing systemic harms from supposed "help" systems. 

I see no acknowledgement of past and ongoing failures of existing "help" systems. 

I see only a scant minimum effort devoted to tackling social determinants of health. 

I would not, as an Expert by Experience individual myself, put full support behind this report. It's a complex issue criticizing systems that help some and harm others. It's a delicate and challenging task. I don't see this report rising up to meet that challenge, and I feel unrepresented in what the report says about my community does and doesn't need.

* * *

Can contact me at

Please consider donating to support this work. Never required. Always appreciated. 

Donate Link:

* * *

Reference Notes

December 2022 SURSAC Steering Committee Report

Categorization of  SURSA Committee Representation 

Source: Dec 2022 List of the Committee Roster

Government (14)

- Director’s Appointment, Committee Chair Michael Langer Thurston County

- House of Representatives, Democrat Caucus Lauren Davis Snohomish, parts of King (32nd District) - - House of Representatives, Democrat Caucus (Alternate) Jamila Taylor King, Pierce County (30th District)

- House of Representatives, Republican Caucus Dan Griffey Mason, parts of Thurston, Kitsap (35th District)

- House of Representatives, Republican Caucus (Alternate) Gina Mosbrucker Klickitat, Skamania, Yakima (14th District)

- Senate, Democratic Caucus Manka Dhingra King (45th District)

- Senate, Republican Caucus John Braun Clark, Lewis, Cowlitz (20th District)

- Governor’s Office Amber Leaders Thurston County

- Representative of Prosecutors Chad Enright Kitsap County

- Representative of Public Defenders John Hayden Clallam County

- Representative of Local Government Kevin Ballard Pierce County

- Recovery Housing Provider Sherri Candelario King County

- Outreach Services Provider James Tillett Spokane County

- Representative of Sheriffs and Police Chiefs Donnell Tanksley Whatcom County

Corporations (1)

- Representative of the Association of WA Health Plans Sarah Melfi-Klein King County

Practitioners/Researchers (5)

- Expert from Addictions, Drug, & Alcohol Institute at UW Caleb Banta-Green King County

- SUD Treatment Provider Christine Lynch Kitsap County

- Expert in Serving Persons with Co-Occurring SUD and MH Sarah Gillard Franklin County

- Employee Who Provides SUD Tx and Serves as Member of a Labor Union Representing Workers in Behavioral Health Field Addy Adwell King County

- Expert in Diversion from the Criminal Legal System to Community-Based SUD Care Malika Lamont Thurston County

Expert by Experience (5)

- Youth (1 of 2) in Recovery from SUD who Experienced Criminal Legal Consequences Hunter McKim Whatcom County

- Youth (2 of 2) in Recovery from SUD who Experienced Criminal Legal Consequences Kendall Simmonds Pierce County

- Adult in Recovery from SUD who experienced criminal legal consequences (1 of 3) Don Julian Saucier Kitsap County

- Adult in Recovery from SUD who experienced criminal legal consequences (2 of 3) Chenell Wolfe Grant County

- Adult in Recovery from SUD who experienced criminal legal consequences (3 of 3) Alexie Orr Okanogan County

Other Reference Material

Washing State Health Care Authority Project Page: State v. Blake: ESB 5476 and behavioral health expansion

Link: SURSA Committee First Meeting December 6th, 2021

* * *


Photo by Clay Banks on Unsplash

No comments:

Post a Comment