The Fight Against Involuntary Commitment: Are Protection & Advocacy Systems Fulfilling Their Mission?

Spurred on by narratives that street problems are caused by mental health issues rather than by worsening economic inequities, new bills expanding powers to involuntarily commit people have been leapfrogging each other in recent years from California and New York to Oregon, Oklahoma, Indiana and beyond. Around the country, small, underfunded organizations and scrappy volunteer groups—often brought together by peers, survivors and users of the mental health system—struggle to mount campaigns to fight back and defend civil rights.

Yet every year, tens of millions of dollars in federal funding goes to state “Protection & Advocacy” (P&A) organizations specifically for the purpose of defending the rights of people labeled with mental illnesses—and that funding is supposed to be controlled by people with lived experience.

So, is that funding being optimally used? Could P&As be doing more and better in the battles against forced psychiatric interventions? (How many people have even heard of P&As?)

Some people believe many P&As could and should be doing much more—and argue that the core problem is that people with lived experience aren’t actually being allowed to control those funds. Consequently, a new group led by prominent, long-time survivor-activists, alongside a growing number of people experienced with P&As, have begun speaking out about what needs to change so that P&As can wield the political heft they were originally conceived to do.

Yet even as this movement rises, pro-force advocates are calling for the Trump administration to axe the funding altogether.

The future of psychiatric rights in America may hang in the balance.

History of P&As and PAIMI Funding

The “Protection and Advocacy” system was established federally in the 1970s to create state-level organizations with special investigative and legal powers to uphold the rights of people with physical or intellectual disabilities. All states and territories and several Native American tribes have a P&A—usually based at a nonprofit organization, and often with “Disability Rights” in their name. P&As get most of their funding through about ten federal programs related to upholding the rights of people with different disabilities, or for work on cross-disability issues such as combatting employment discrimination and assisting social security recipients.

According to the Substance Abuse and Mental Health Services Administration (SAMHSA), the “PAIMI program” specifically was established by the Protection and Advocacy for Individuals with Mental Illness (PAIMI) Act of 1986 after “congressional findings of widespread abuse, neglect, and exploitation of individuals in state psychiatric institutions.” The PAIMI Act empowered P&As—with the guidance of newly created volunteer “PAIMI Advisory Councils” at least 60 percent comprised of people with lived experience of the mental health system—to access psychiatric institutions and their records, intervene on behalf of individuals, conduct systemic investigations, and launch precedent cases and class-action lawsuits to protect the rights of people labeled with mental illnesses. In 2000, P&As were further empowered to investigate community-based mental health systems as well.

The PAIMI program funding parcel comes through SAMHSA, which also has oversight powers. PAIMI program budgets can be substantial: In 2020, the California P&A got over $3 million, Texas $2.4 million, Florida, Illinois, New York, Ohio, and Pennsylvania more than $1 million each. The majority of PAIMI allocations to state P&As that year were about half a million dollars.

Biennial performance reports submitted to Congress provide summaries of selected activities P&As did with their PAIMI funding. For example, in recent years P&As have exposed and opposed excessive use of restraints at New York’s Bellevue hospital, over-representation of Black residents in psychiatric incarceration in California’s Alameda County, and abusive forced stripping in Washington facilities.

Notably, however, as these efforts to reduce abuses of committed patients have been going on, there have been expansions to involuntary commitment in every one of those same states.

So, why do some P&As seem more focused on merely curbing abuses rather than on fighting expansions to commitment? That’s what Kristina Kapp was asking when, in 2022, she found out that, in many states, the PAIMI Advisory Councils (PACs) of people with lived experience were not being allowed to truly influence P&A activities—and that this situation was arguably illegal.

PACs Save Lives

Kristina Kapp, who goes by “KK,” playfully describes herself as a disability “triple threat”: She was born with a chromosomal defect and intellectual disability, has lived through substance addiction, and has been labeled with multiple psychiatric disorders and forcibly treated.

For much of her youth starting from age eleven, KK was institutionalized in a hospital where, she says, she was physically and sexually abused—other former child patients have made similar accusations against the hospital for decades. When KK got released, she says she decided to “turn that pain into purpose,” and became a “diplomatic disruptor” and “humanitarian ambassador” in mental health rights advocacy.

In her mid-twenties, KK learned that her life-changing release from that hospital had come about, at least in part, due to a Protection & Advocacy organization that had sent in peers to talk with patients at the institution and reported on abuses there. Yet she had no idea what a P&A was.

By 2010, KK was working for the Alabama government in a mental health advocacy role, and witnessed firsthand what the Alabama P&A achieved. The peers with lived experience on the Alabama PAC met with incarcerated patients, and then informed and guided the P&A attorneys’ legal actions. And while playing this critical rights-protecting role, KK says, these peers were also playing a part in transformative community healing.

“Imagine how it makes isolated individuals in hospitals feel when they get connected with fellow survivors and peers [who] really care… and provide them a safe space to say the truth,” says KK. “It was incredible, the way survivors and attorneys collaboratively worked together… [P&As and PACs] are a space and a voice for the peer community in policy, and in elevating the unspoken.”

When she moved to Ohio in 2019, KK joined the PAC with Disability Rights Ohio. However, she found the relationships between P&A staff and PAC members strained and less effective than she’d hoped. Then, at the 2022 National Association for Rights Protection and Advocacy conference, KK participated in a meeting with fifty other people discussing their respective P&As and PACs—and was shocked by what she heard.

“It was mind-blowing, the large amount of variance around the country,” says KK. “It was empowering and encouraging to hear about the collaborative relationships and community outreach going on in some states. And disheartening and deflating to hear how some PAC members were feeling marginalized, tokenized, and unheard and unappreciated.”

KK started to discuss these issues with psychiatric rights attorney Jim Gottstein.

Latent powers of PACs

The mission of Jim Gottstein’s own organization, PsychRights, is “to mount strategic litigation against forced psychiatric drugging and electroshock”—Gottstein has won a number of cases before Alaska’s Supreme Court. (Some of his long history as survivor-attorney-activist is recounted in The Zyprexa Papers.) Gottstein says that, during his career, he tried unsuccessfully several times to get the Alaska P&A to take on particular cases; he began assuming that psychiatric patients’ rights were not a priority for them.

But when he heard KK speak about how the PAIMI program was forged as a tool for fighting involuntary commitment, and P&As were getting millions of dollars to do exactly that, Gottstein became intrigued.

“I started looking at the PAIMI statute,” says Gottstein, “And I thought, ‘Holy shit. It’s an army of lawyers, that are funded. And their mandate includes ‘to ensure that the rights of individuals with mental illness are protected.’” What could be more central to such a mandate than fighting involuntary commitment, thought Gottstein.

The PACs, required by law to be majority controlled by people with lived experience of the mental health system, are mandated to oversee the PAIMI program budget and “independently” evaluate the P&A’s efforts. The PACs also help decide what issues, cases, and activities their P&A will take on to protect the rights of people labeled with mental illnesses—the legislation states that the P&A Board and PAC must “jointly develop” the PAIMI program “priorities.”

“When I read the PAIMI Act, I see [late, long-time survivor-activists] Judi Chamberlin‘s and Rae Unzicker’s fingerprints all over it,” says Gottstein. “It clearly recognizes that there needed to be this survivor, lived-experience voice in setting the priorities… Both the P&A Board and the PAC each have a veto power, and so there has to be an agreement. The PAIMI Advisory Councils really have a lot of power.”

Like KK, Gottstein has his own touchpoint for excitement about what P&As and PACs can do. As rates of psychiatric incarceration have risen, Gottstein now estimates that, today, no more than 10% of involuntarily committed people truly meet the criteria set out as constitutional in U.S. higher court rulings. (Gottstein’s full legal analysis is here and his main arguments for change here) Therefore, P&A attorneys could be regularly challenging virtually any forced psychiatric interventions on constitutional grounds and get the criteria more narrowly applied—or sue to compel public defenders to properly defend the many people facing unconstitutional commitments. “If you could stop ninety percent of psychiatric incarceration and forced drugging,” says Gottstein, “it would be a different world.”

Therefore, KK and Gottstein last year launched the PAIMI Advisory Council Empowerment Project, through which they’ve been engaging with many former and current PAC members, and educating them and the public about PAC powers, how to join PACs, and what PACs might truly accomplish.

So, what have they learned about why there aren’t innumerable well-funded PACs with armies of lawyers at their disposal operating as high-profile hubs vigorously fighting against involuntary commitment?

“Most of the PAIMI councils have just basically been suppressed,” says Gottstein.

Rubber Stamping vs Empowerment

In interviews I conducted with two dozen members of PACs around the country, it became clear that KK and Gottstein are striking a nerve.

Most PAC members I talked with asked not to be identified, out of respect for working relationships at their P&As that they hope will improve. But the most frequent view I heard was that PAC members are all-too-aware that they’ve been losing ground to promoters of forced treatment, even as they feel like they’re “rubber stamping” less-important PAIMI program priorities. Many also complained that they’d been reined in from speaking in the community or getting engaged politically on behalf of the PAC or P&A.

“We were being told what we should sign on to,” said one PAC member. “We were not advising the (P&A) Board. The Board and staff were telling us: these are our projects for the year.”

Another said, “It’s like the staff attorneys and the managing staff at the P&A are just giving us updates, and then we’re kind of just relegated to the background. It feels like we’re just rubber stamping.”

“We’re asked, ‘yay or nay, and if nay, tell us your comments, and thank you for playing your role,” said still another. “It reproduces the tokenistic feel of the [mental health] system itself.”

Due to their cross-disability work, many P&As don’t have staff attorneys that specialize in psychiatric rights—which was another problem many PAC members identified. Some felt that P&A staff and attorneys are less sympathetic towards psychiatric disabilities than other disabilities, and they described their proposals being brushed off with “microaggressions,” hostility, or “gaslighting.” Some P&A staff reportedly told their PACs that it was ill-advised to challenge prevailing pro-force public sentiment—helping curb the worst abuses was the best-possible win. Further, some P&A attorneys reportedly admitted that they weren’t entirely opposed to forced treatment—some P&A boards have even installed representatives of pro-force organizations on the PACs.

Amid conflicts over such issues, a number of PAC chairs have quit in anger or gotten pushed out by P&A boards.

“It seems really convenient for them to get the funding and just have us be this ineffective, token body,” commented one PAC member.

Even people in more cooperative situations could relate to such problems. Heather Simms, PAC chair for Disability Rights New Jersey (DRNJ), described her P&A and PAC as “very collaborative.” Nevertheless, she added, “I definitely believe that there can be challenges. I had them when I first came in… I didn’t feel that it had the value that it has now.”

Crucial to that shift, said Simms, was mutually respectful, ongoing communication with DRNJ’s staff liaison to the PAC, who at times educated PAC members about their roles and other times educated P&A staff and attorneys about PAC concerns.

Virginia Knowlton Marcus plays this liaison role as CEO at Disability Rights North Carolina (DRNC), and both she and PAC chair Cherene Caraco describe their working relationship as constructive and cooperative. Nevertheless, Marcus says, even among well-intentioned folks, challenges and stresses can emerge as volunteer PAC members—some perhaps with significant disabilities or communication impairments—are statutorily needed by P&As to review and sign off on innumerable, complex items, while P&A attorneys are “hanging on by our fingernails” to meet community needs and cannot get to many worthy issues and cases that PACs might want them to.

Yet it’s exactly this kind of balanced mediating that many P&As appear to be missing. Disability Rights California (DRC), for example, recently installed a new person in such a mediating role—and they evidently desperately needed to.

There have been serious conflicts between some PAC members and the P&A staff and Board involving issues of PAC empowerment and what some saw as weak DRC responses to repeated aggressive expansions to forced treatment in California.

A SAMHSA “monitoring visit” in 2024 found that “DRC’s PAC, Board, and staff did not have the same understanding about the roles and responsibilities of the PAC” and that DRC had not adequately demonstrated that the P&A “works jointly” with the PAC. (Gottstein has posted online both SAMHSA’s report and DRC’s reply.) Furthermore, the DRC Board had seized unilateral control of who could be on the PAC—and, according to SAMHSA, this was not in compliance with the law.

DRC attorney Oscar Lopez says that, in response, DRC recently appointed him as staff liaison to the PAC, held an orientation training about the PAC’s role, and changed how meetings are run to make them more accessible and democratic. In addition, the P&A Board and PAC now share responsibility for bringing on new PAC members.

“I’ve been very focused on just trying to build more trust between the PAC and the DRC staff,” says Lopez.

Those sound like constructive developments. However, the issue of “trust” highlights that there are two distinct problems involved: Some PAC members feel politically disempowered, but some also feel interpersonally discounted, oppressed, and harmed. Both of these likely require solving to unleash the full, immense collaborative potential of P&As and PACs–but it appears both problems have gone unaddressed at many P&As for many years.

A Constant Lack of Clarity; an Enduring Lack of Power

Many of the PAC members I spoke with were already aware of KK and Gottstein’s efforts—but their concerns do seem to reflect broader problems. In 2011, SAMHSA released the first (and apparently only) comprehensive national evaluation report of the PAIMI program. The SAMHSA reviewers pointed to good things that P&As had done; nevertheless, as many contemporary PAC members also state, the reviewers found that PAIMI priorities were often taking a back seat to a P&A’s work on other disability issues and, often, new PAC members were not being properly educated about their roles. Furthermore, the disempowerment of people with lived experience of the mental health system was a widespread, systemic problem. “The role of PACs is less robust than intended,” the report stated. “Councils participate in priority-setting but do not guide or critique the work of PAIMIs to the extent envisioned when the program was enacted… P&A staff guide councils through their paces—not the other way around.”

How common across the country is this still today? SAMHSA declined to answer or provide anyone to be interviewed.

Perhaps no one else is better positioned to answer than the National Disability Rights Network (NDRN), the nonprofit association that represents and provides various supports to all of the P&As.

NDRN attorney David Hutt emphasizes, “We don’t control [the P&As]. They’re all independent entities.” Hutt acknowledges that NDRN is aware that some P&As and their PACs work together more effectively than others. He also acknowledges that NDRN has never done a national survey to better understand how widespread or serious these problems are.

If a PAC does feel disempowered, I ask, can the PAC demand to be heard? Does “jointly develop” mean that PACs have a veto power in establishing their P&A’s PAIMI program priorities, as Gottstein argues?

“We don’t have an official position on what that provision in the statute means,” says Hutt. NDRN’s hope, he says, is that P&As and PACs have a “harmonious relationship.” He points to a training course NDRN recently developed for new PAC members to help create “common understanding.”

The course—which SAMHSA approved—seems to give mixed messages. It states that PACs are independently “expected to drive” the annual reports to SAMHSA describing how effectively the P&A is addressing priorities that the PAC and P&A jointly developed. But elsewhere, the course states that PACs can merely “offer” suggested priorities for the P&A Board to consider “as possibilities.”

Such vagueness is anathema to law, so Gottstein and KK’s PAIMI Advisory Council Empowerment Project activities include advising people more precisely on PAC roles, powers, and effective collaboration. “We started focusing in a lot of on how they could exercise their voices effectively,” says KK.

What do they hope can be achieved? Both KK and Gottstein point to Disability Rights North Carolina (DRNC) as case exemplar—where PAC empowerment, community healing, and effective attacks against forced treatment have all come together.

Doing it “Rights”

Cherene Caraco has been on the PAC at DRNC for three years, and is currently PAC Chair. Caraco was at the same 2022 conference meeting as KK, and says she was shocked to hear how some PAC members in other states felt they’d been disempowered and co-opted. “I thought all of the PAIMIs around the country operated like we did,” she says.

As a long-time advocate and CEO of the peer-run Promise Resource Network, Caraco is familiar with the “tokenization” of lived-experience participation that can take place in many mental health system policy settings. “That’s a perpetuation of the systems-level oppression that we experience as people who are service recipients, and now you’re recreating that system of oppression in our role as advisors,” she says.

At DRNC, the PAC itself controls who can join the PAC, and Caraco says they vet all new members to ensure they bring a “rights lens” rather than a pro-force lens. And PAC members play key roles in the P&A’s work.

“We are closer to the community, because we are all people that have been directly impacted by systems and services. We see policy translated on the ground and how it’s harmful to our community,” says Caraco. This also means that PAC members are best positioned to gain the trust of other harmed people and “sound the alarm bells” about emerging issues—and call these to the attention of P&A attorneys. “I reach out to our legal team at [DRNC] frequently to try to understand: This is what we’re seeing in the community—what are the legal opportunities to strategize around this particular issue?”

By way of example, Caraco describes how, as in many states, data on involuntary commitments in North Carolina has long been sparse and unreliable. So, it was actually people at peer-run organizations and PAC members that first started noticing huge increases in psychiatric incarcerations. Eventually, DRNC staff became instrumental in coordinating a team to help find, gather, and publicly report data showing that, indeed, rates of involuntary commitment in the state had, at the very least, doubled in ten years.

Resulting media coverage, especially of increasing incarcerations of children, helped draw public attention. The PAC then became an impromptu, combined investigative partner, educational resource, emotional support hub, and organizing network for many aghast, outraged, and frightened parents who’d reached out for mental health help and watched their children swept into institutionalization horrors. “It was everything from Medicaid fraud, to lack of due process, to their young people being held without any sort of treatment, to sexual abuse, and physical abuse,” says Caraco. “There were also threats to the parents: that they’d be arrested or hospitalized if they interfered, or even lose their children to guardianship.”

DRNC’s PAC and P&A agreed to establish several strong priorities to fight involuntary commitment and psychiatric coercion, and will be issuing a white paper on the harms of involuntary commitment, along with recommendations for change, says Caraco. The combined efforts also led to a number of bipartisan state bills and funding initiatives. Non-police emergency responses got legislated, six new non-coercive peer-run respites were created, a peer-run warmline was extended statewide, and peer-run wellness centers were expanded. In addition, there’s movement towards piloting a version of Italy’s Trieste model that has nearly eliminated involuntary commitment. “North Carolina’s mental health system was very stuck– there was a lot of bias against non-coercive peer-run facilities,” says Caraco. “All of this momentum has helped get the system unstuck and it really has been a sea-change, a pivotal shift.”

The process has also been in some ways healing—healing of, in and by community—for many people involved. “There is a healing piece—of taking back your power and taking back your voice,” says Caraco. “I don’t use [the PAC] as my personal way to heal my wounds. I use it as a way to change the narrative; I find my healing in voice and influence.”

Caraco believes the work that KK and Gottstein are doing could similarly lead to helping create PACs and P&As that are more empowering for people with lived experience, more healing of communities, and more politically effective at shifting dominant narratives and fighting back against involuntary commitment.

Notably, she points out, one bill that got killed by resistance from representatives of the mainstream mental health system involved better tracking of the rates and outcomes of involuntary commitment. Although it was characterized as too much of an administrative headache, Caraco suspects mental health institutions don’t want strong evidence emerging of how much coercion is happening and how often it’s harming more than helping.

“It’s the inconvenient truth,” she comments. “We all know that we’re doing this… But it’s the best-kept secret, and nobody wants to blow the lid off of it, because then we would have to practice differently. We would have to investigate and evaluate what’s actually going on and really fundamentally change the way our hospitals and our community-based mental health systems are operating ”

For Caraco, this highlights how the fight against involuntary commitment may indeed be the core, toughest, and arguably most important political battle for the rights of people labeled with mental illnesses, since the entrenched power imbalance drives much of what’s wrong and abusive in the mental health system.

Rising Opportunities . . . and Threats

Even if many psychiatric rights activists are still unaware of the enormous, untapped potential for PACs and P&As to lead fundamental change, the mainstream psychiatric system and pro-force advocates seem to know.

Indeed, pushback began during the very crafting of the PAIMI Act in the 1980s: Although at least 60 percent of PAC members must be people with “lived experience,” the legislated definition includes being a family member of someone labeled mentally ill. This highly politicized re-defining of “lived experience” came about, according to the 2011 SAMHSA report, due to “family and state groups gaining influence” and “consumers and rights advocates losing ground.”

A recent bulletin from the pro-force, family member-driven Treatment Advocacy Center encourages their members to get on PACs—and highlights that TAC director Nina Richtman currently sits on Disability Rights Iowa’s PAC (Richtman is also pictured lobbying to abolish FDA safety controls on the dangerous antipsychotic clozapine).

Meanwhile, the SAMHSA report also advised Congress to give “serious attention” to the fact that many psychiatric institutions and state governments were illegally hampering investigations by P&A attorneys—resistance that’s continued.

Initial drafts of the 2016 Murphy mental health bill proposed gutting PAIMI Act powers. This year the Manhattan Institute publicly lobbied the Trump Administration to cut all PAIMI funding and expand forced drugging. And the recent cuts to SAMHSA and indications that SAMHSA itself will soon disappear also seem threatening. This week, a leaked Health and Human Services budget proposal portended huge cuts to the PAIMI program.

And SAMHSA—itself a promoter of psychiatric coercion—apparently doesn’t want to see anti-force PACs empowered, either. Last year, Lisa Stallworth, PAIMI Program Coordinator for SAMHSA, unexpectedly attended the monthly MindFreedom “Judi’s Room” in which KK and Gottstein were advising the public and PAC members about the powers of PACs.

Stallworth seemingly tried to shut the meeting down. “Anytime there’s a presentation related to the PAIMI program, it actually should come through the federal agency for clearance,” said Stallworth.

The presentation nevertheless continued, but when Stallworth interrupted again, Gottstein pushed back: “I welcome you being here, but the idea that we have to ask permission to provide information, our view of information, is really not acceptable.”

Stallworth doubled down, pointing out that even NDRN “cannot do presentations or publish any types of courses without going through us first.”

“I thought it was outrageous,” comments Gottstein to me later. “I think Stallworth wanted to intimidate us.”

A member of a PAC who attended the presentation says, “I wasn’t surprised, because I’ve already been involved in a PAIMI Council for three years. And so I was thinking, ‘Yep, this is basically how they try to keep you under their thumb.’”

It’s why Gottstein believes assertiveness could be required for PAC members to bring some P&A staff and boards to the negotiating table—such as a PAC refusing to officially sign off on a P&A’s PAIMI program priorities, if those priorities were not truly jointly developed. “I think just having one do it could really break the logjam,” he says.

Depending on how the P&A or SAMHSA responded, that could land in court. But such serious infighting could be risky at a time when P&As and PACs need to grow their public profile and influence. Which is also perhaps one of the best arguments in support of the PAIMI Advisory Council Empowerment Project, as KK and Gottstein try to strengthen the good that P&As and PACs can do in closer, more robust collaboration.

“Communities are needing this voice more than ever,” says KK. She and Gottstein have begun working with a number of P&A executives and PAC chairs together who want to improve their working relationship. “That’s a real positive. It’s exciting. I really believe in my heart that this is something that’s possible,” says KK.

KK is also hoping to encourage more people who support psychiatric rights to join PACs, develop opportunities for ongoing communication and shared learning among PAC members around the country, and document national standards for PAC and P&A collaboration.

“This has the potential to be the most impactful thing I’ve ever done,” says Gottstein.

Many PAC members I spoke with are feeling more inspired, supported, and hopeful as a result of KK and Gottstein’s efforts.

“If the disability rights organization of the state is willing to give the [PAC] members rein to do things, I really think that it could be a powerful thing,” says one.

A frustrated and recently departing PAC chair told me she said to remaining PAC members that she still believes their PAC could be a vital “catalyst” for change: “Be the dreamers you can be.”

“If we’re not showing up, how can we be upset that our issues aren’t being addressed?” says Simms. “Everybody should know what their P&A is.”

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