A quarterly legislative update from the Treatment Advocacy Center
Winter 2021
   
 

Dear Treatment Advocacy Center partners, 

My name is Clara Keane, and I joined the Treatment Advocacy Center team in August as legislative advocacy manager. I will be communicating with you regularly about legislative updates regarding severe mental illness (SMI) and opportunities to take action. Today, I am very excited to share with you this inaugural issue of SMI Advocate, Treatment Advocacy Center's new quarterly newsletter! 

SMI Advocate is a publication for you, our local partners. Read it to stay informed about relevant bills and other advocacy initiatives you can engage with to advance our goal of making timely and effective treatment for those with SMI a reality.

Looking back over the last year, it's remarkable how much we've accomplished. This issue overviews 2021 legislative advancements and offers detailed updates on state-level advocacy as well as federal and national issues. 

I look forward to partnering with you in our shared advocacy to demand better outcomes for families affected by severe mental illness!

 
  2021 by the Numbers  
 

This year, the Treatment Advocacy Center advocacy team continued to identify and track bills with the potential to bring timely and effective treatment to people with SMI. 

Our loved ones deserve better than the broken mental health system they are trapped in. It's absolutely critical for lawmakers at all levels of government to hear your stories so they can get a glimpse of what it's like to seek treatment in a system that neglects the sickest among us and criminalizes the symptoms of mental illness. 

Using new grassroots advocacy tools, we strengthened our commitment to help you add your voice to demands for reform. We are so grateful for the unwavering support you have shown for our advocacy efforts. We distributed seven action alerts in 2021, and you sent a total of 1,484 messages directly to your lawmakers. There will be many more opportunities to get involved in 2022, so stay tuned!

Year round, our advocacy staff assist legislators and advocates across the country in drafting legislation and participating in workgroups aimed at fixing the broken mental health system. Our team members delivered testimony to state legislative groups over a dozen times in 2021. This activity helped secure a number of wins in the 2021 legislative sessions and is paving the way for future advancements.  

Treatment Advocacy Center staff participated in stakeholder groups whose work resulted in improved assisted outpatient treatment (AOT) laws in Louisiana, Nevada and Virginia, eliminating significant barriers that impeded access to enrollment in programs. The AOT laws in California, Hawaii and Utah also saw improvements this year. In total, 12 Treatment Advocacy Center priority bills were enacted in 10 states. Our staff also worked closely with lawmakers and advocates on another six bills to create momentum for future wins.

At the federal level, lawmakers continue to legislate on issues surrounding COVID-19, and they have broadly acknowledged the need to overhaul the mental health system. Treatment Advocacy Center is actively joining this dialogue to ensure the SMI community is not left out of these critical conversations. We sent letters detailing policy proposals and outcomes in response to three congressional requests for information. 

In collaboration with other leaders in our field, Treatment Advocacy Center has taken the lead in demanding people with SMI be visible and prioritized in our nation's response to COVID-19. In partnership with Clubhouse International, our Office of Research and Public Affairs published a report on COVID-19 vaccination of people with SMI. 

Executive Director Lisa Dailey led the charge in creating a road map to completely re-envision our crisis response and treatment systems so that this July, when 988 replaces the existing national suicide prevention hotline to create a new resource for those in crisis, it can succeed for families affected by SMI. A crisis response system that cannot help those with the most severe illnesses is a failure--and we are front and center demanding reform that serves all those in crisis. 

With your support and active partnership, we can't wait to continue this work in 2022! 

 
  State Updates  
 

This year, we are celebrating the enactment of 12 priority bills championed by the Treatment Advocacy Center that will improve access to treatment for people with SMI. We also have updates to share on important bills in Massachusetts and Ohio. Another four bills our staff worked on that didn't pass in the 2021 legislative sessions helped lay the groundwork for future bills that will lead to much-needed improvements to inpatient and outpatient commitment standards.

Key barriers to the functioning of outpatient commitment programs were removed in four states 

Treatment Advocacy Center staff worked closely with lawmakers, advocates and stakeholder groups for several years to identify barriers in outpatient commitment statutes and draft legislation to improve the functioning of programs in California, Louisiana, Nevada and Virginia. 

  • California - SB 507, effective Jan. 1, 2022, made critical improvements to Laura's Law. A person no longer has to be "substantially deteriorating" in order to enroll in a Laura's Law program, finally allowing for its use as a "step down" to outpatient care after hospitalization. Read the Fall 2021 issue of Catalyst for more on this bill and how it builds on legislation passed in 2020 to flip counties' participation in Laura's Law from opt-in to opt-out. All these changes combined will make a tremendous difference in expanding access to Laura's Law programs for those most in need of this life-saving intervention.
  • Louisiana - HB 589, effective Aug. 1, removed barriers that often proved prohibitive for community members to petition for an AOT order ("Nicola's Law"). Changes include eliminating the petition fee and removing the requirement that the petitioner include a physician's evaluation of the proposed patient--shifting that responsibility to the court to appoint a physician to conduct the evaluation. Although Nicola's Law was enacted in 2008, no programs were implemented until 2018. The difficulty many states face in launching an AOT program is why Treatment Advocacy Center offers technical assistance to help ensure the use of best practices and program design meets the needs of each community. This bill was the product of a workgroup championed by our local partner Healing Minds NOLA of AOT stakeholders from across the state. The legislation specifically addressed shortfalls in Nicola's Law that were revealed in the implementation process. Read more details on these changes to Nicola's Law in the Fall 2021 issue of Catalyst.
  • Nevada - SB 70, effective Oct. 1, revises outpatient eligibility criteria to allow "step-down" AOT at the time of hospital discharge. Previously, the standard had been the same basis as inpatient commitment, requiring a person to pose a current danger to self or others. Treatment Advocacy Center staff participated in a year-long workgroup charged with drafting a bill to address this barrier and make other needed changes to improve the functioning of the law. Read more details in the Fall 2021 issue of Catalyst.
  • Virginia - HB 2166 completely reformed the mandatory outpatient treatment (MOT) law in the commonwealth. Among the critical improvements are removing language that had rendered the program essentially voluntary, extending initial MOT orders from 90 days to 180 days and empowering family member petitioners to seek enforcement of MOT orders through court review. The legislation was a product of a two-year stakeholder workgroup tasked with reforming the MOT statute. Treatment Advocacy Center took the lead in drafting the new language. The bill was signed into law on March 18 and will take effect July 1, 2022. Because the changes in the law are still difficult for programs to follow, we have continued to engage with the stakeholder group to introduce additional legislation that will better organize both the inpatient and MOT laws, making implementation that much simpler.

Notable new laws 

The following eight bills were also enacted this year. They make a variety of improvements to states' inpatient and outpatient commitment standards, as well as mandating collection of critical data. 

  • California - SB 465 requires the Mental Health Services Oversight and Accountability Commission to issue a biennial report on outcomes for people receiving community mental health services under a full service partnership model as well as those who are eligible but not enrolled. Key outcomes tracked--including experiences with incarceration, criminalization, hospitalization, housing status and enrollment in and separation from services--will help better identify the unmet needs of the California SMI community.
  • HawaiiHB 345 replaces the requirement for a public defender to participate in assisted community treatment proceedings with the appointment of a guardian ad litem to represent the best interests of the individual if there is no existing guardian.
  • Maine - LD 869 requires the Commissioner of Health and Human Services to convene a stakeholder group to review the process of inpatient and outpatient civil commitment for efficiency and effectiveness and to increase participation of non-state mental health institutions in Maine's progressive treatment program. A report with recommendations will also be required.
  • Maryland - SB 286 made important improvements to the Behavioral Health Crisis Grants Program intended to decriminalize crisis response. These include provisions to serve all members of the community with cultural competence and language access, more engagement with the community and incorporation of community feedback, releasing annual data that is disaggregated by race, gender and zip code and designating at least one-third of appropriations for mobile crisis teams beginning in fiscal year 2023.
  • Ohio (2) - SB 2 authorizes AOT as an alternative to competency restoration for certain types of offenses. The law prohibits judges from putting low level and non-violent defendants into the hospital for competency restoration. Instead, probate judges are directed to dismiss the charge and file a petition for AOT. HB 136, which prohibits the death penalty for individuals with SMI, passed in the 2020 legislative session but wasn't signed into law until January of 2021. This bill was championed by our late board member Dr. Frederick J. Frese III, and we celebrate its enactment in his honor.
  • Utah - HB 155 clarifies and improves Utah's AOT criteria and procedures, notably extending the duration of an initial order from six to twelve months. 
  • Wyoming - HB 38 designates adults with severe mental illness as a priority population for state-funded human services programs.

Bills to watch in 2022

These bills would have transformative impact on improving civil commitment laws. Treatment Advocacy Center staff have been working closely with the bill sponsors and our local partners on both bills--and we will need your help! The legislatures in Massachusetts and Ohio meet year-round, and these bills will carry over into the 2022 sessions for further consideration. If you live in Massachusetts or Ohio, stay tuned for opportunities to testify or otherwise share your personal experiences and support. 

  • Massachusetts - H 2121 would establish statutory authority for AOT. Massachusetts remains one of only three holdout states (along with Connecticut and Maryland) without statutory authority for AOT. Advocates testified both in support and in opposition during a June hearing before the Joint Committee on Mental Health, Substance Use and Recovery.
  • OhioHB 439 would establish a psychiatric deterioration standard in Ohio. Nearly half of all states include psychiatric deterioration in their criteria for inpatient commitment. The bill would enable law enforcement and other designated professionals to intervene in instances in which a person has a history of untreated mental illness, is too ill to appreciate their need for treatment, and without treatment is likely to suffer mental deterioration and, as a result, become a danger to self or others. Research shows that the longer an individual experiences untreated psychosis, the longer it will take them to emerge from it, and the less likely the person is to make a full recovery. Treatment Advocacy Center is active in a coalition of leading mental health and judicial organizations in the state, advancing this critical bill. The public will have the opportunity to provide testimony during a Civil Justice Committee hearing on Jan. 18, 2022.

Advocacy momentum 

The following is a sampling of legislation we supported that did not pass. As advocates, we know that it often takes many attempts to succeed when we push for change. These bills created momentum that will be valuable for similar proposals in the future. 

  • Maine - LD 1090 would have allocated funds to cover the filing fee for AOT petitions. Maine's unusually high fees present a barrier to AOT utilization. 
  • Maryland - SB 928 would have defined "danger to self or others" in civil commitment law to officially include common types of danger such as "grave disability." The bill was a product of a Behavioral Health Administration stakeholder group and may pave the way for a definition of "danger to self or others" that is inclusive and provides much-needed guidance in the future.  
  • Texas - HB 3835 would have defined "danger to self" to explicitly include "grave disability" and "psychiatric deterioration" as recognized types of "danger to self." The Texas Legislature does not meet in 2022, but we are hopeful that this bill will be reintroduced in the 2023 session.
  • Oregon - SB 187 would have defined "dangerous to self or others" in inpatient civil commitment law. Treatment Advocacy Center staff participate on a legislative workgroup to decriminalize mental illness in Oregon, and this bill will likely be reintroduced in the future.
 
  Federal Updates  
 

The Treatment Advocacy Center continues to participate in critical national dialogue on how to reform our mental health system. Our goal, as always, is to make sure that families affected by SMI are represented and included in all relevant national and federal conversations to ensure that the longstanding pattern of neglecting their needs does not continue. 

We shared policy proposals in response to three congressional requests for information 

We pay close attention to the conversations Congress is having around mental illness and take every opportunity to share our data and policy proposals. In 2021, we responded to three requests for information (RFIs). 

  • In response to Sens. Michael Bennett (D-Colo.) and John Cornyn's (R-Texas) request for feedback on their whitepaper, "A Bold Vision for America's Mental Well-being," Treatment Advocacy Center sent a letter on October 8. We urged the Senate to act to ensure accurate counting of people living with schizophrenia, track individual outcomes throughout the healthcare and criminal justice system, and address disparities of treatment among underserved communities by accurately collecting demographic data on people living with SMI.
  • Treatment Advocacy Center sent a letter on Oct. 27 in response to the full Senate Committee on Finance's RFI requesting broad feedback to address unmet mental health needs. We outlined twelve specific policy recommendations to improve access to treatment for people with SMI.
  • We also responded to Sens. Bill Cassidy (R-La.) and Chris Murphy's (D-Conn.) RFI seeking feedback on certain programs funded under the Mental Health Reform Act of 2016. In our letter sent on Nov. 5, Treatment Advocacy Center outlined the undeniable successful outcomes and ways to continue improving the Assisted Outpatient Treatment Program. The letter also included testimonials from AOT grant recipients.

We took the lead on federal initiatives that impact the SMI community

The Treatment Advocacy Center regularly engages with coalitions of leading mental health organizations and takes the lead when it comes to issues that disproportionately impact people with SMI. This year, we focused on education around risk factors related to COVID-19 and ensuring the nationwide effort to rethink crisis response follows a continuum of crisis services that is sensitive to the needs of the SMI community. 

  • Second only to old age, a schizophrenia diagnosis is associated with the highest risk for COVID-related death. Yet, until recently, many people may not have known they are at an elevated risk. The public and policy makers alike look to the Centers for Disease Control and Prevention (CDC) to determine what precautions to take--but the CDC was not making this information available. Treatment Advocacy Center led advocacy efforts calling on the CDC to follow the data and include schizophrenia on its list of underlying medical conditions associated with higher risk for severe COVID-19. We were relieved when the CDC finally added schizophrenia spectrum disorders and certain mood disorders to its list in October.
  • The Treatment Advocacy Center Office of Research and Public Affairs partnered with Clubhouse International, a community-based organization of 326 Clubhouses throughout the world, in May to conduct an international survey of all Clubhouses to understand barriers and facilitators of COVID-19 vaccination among Clubhouse members. The findings of the report, published in September, indicate that community investment in people with serious mental illness can have a tremendous impact on their health and well-being.
  • Treatment Advocacy Center led the drafting and consensus building with leading mental health organizations in publishing "A Consensus Approach and Recommendations for the Creation of a Comprehensive Crisis Response System." This document serves as a roadmap for states in implementing a full continuum of mental health and substance use care in conjunction with the federally mandated 988 crisis hotline for mental health emergencies.
 
  Action Center  
 

We could not do the work we do without your active grassroots support; your personal stories make all the difference in touching the hearts of lawmakers. This year, we were blown away by your engagement with the action alerts we distributed. 

The five federal alerts resulted in 1,317 messages to federal decision makers! In response to our action alerts, you: 

  • Urged Congress to prioritize clinical research for severe mental illness at the National Institute for Mental Health,
  • Responded to the Senate Committee on Finance's request for proposals to address unmet mental health needs,
  • Urged your Senators to ensure key mental health parity enforcement measures are included in The Build Back Better Act,
  • Asked your U.S. Representatives to cosponsor The Increasing Behavioral Health Treatment Act to repeal the discriminatory IMD exclusion, and
  • Urged your members of Congress to cosponsor The Behavioral Health Crisis Services Expansion Act to help transform crisis response nationwide.

Our California advocates responded to both our campaigns this year with heartfelt stories that lawmakers can't ignore. We are excited to run campaigns in more states in the New Year! 

  • California advocates helped SB 507 (expanded access to Laura's Law, summarized above) cross the finish line! In response to our action alert to urge Calif. Gov. Gavin Newsom to sign the bill, you did not hesitate to share your personal stories and make sure the bill's impact was understood! The Governor received 87 messages as a result of our campaign, and he signed the bill into law on Sept. 30. 
  • When we heard about an informational hearing on ways to improve the Lanterman-Petris-Short (LPS) Act, we had to make sure the voices of family members were taken into account. The LPS Act, California's statute governing civil commitment and conservatorship for grave disability, is outdated and does not serve those who most need it. We are so grateful for our advocates who, once again, took the time to share their stories to make sure lawmakers know what's at stake. Our campaign resulted in 81 written testimonies being submitted to the joint Assembly Health and Judiciary committees' hearing on Dec. 15. 

Visit our Action Center for a list of active campaigns, and make your voice heard today! Thank you for your advocacy on behalf of those with SMI.