Jury is Out on Paid Peer Support for People with Mental Illness

Feb 14, 2018

This author makes a case against paid peer support for people with mental illness.

Paid peer support, whereby one person with mental illness provides help and support to someone else with mental illness for money, is widely implemented and heavily promoted by the Substance Abuse and Mental Health Administration’s (SAMHSA) Center for Mental Health Services (CMHS), mental health industry advocates, the media, and people who are paid to provide peer support.

In spite of being extensively researched, there is little evidence that paid peer support for people with mental illness improves meaningful outcomes or that paid peers provide support better than others.1 Government should conduct research on paid peer support but should not continue expanding mass implementation until independent research shows it improves meaningful metrics in people with serious mental illness. In the interim, the funds should be used for programs that are already proven to reduce the most meaningful metrics, which include rates of homelessness, arrest, incarceration, violence, and needless hospitalization.

Independent Research

The American Psychiatric Association found that “a majority of randomized trials that compare peer-delivered with non-peer-delivered services do not show differences on most outcome measures” and quoted four studies in support of its conclusion.2 A study of 18 trials of 5,597 participants found “there is little evidence from current trials about the effects of peer support for people with severe mental illness. . . . [C]urrent evidence does not support recommendations or mandatory requirements from policy makers for mental health services to provide peer support program[s].”3 SAMHSA reviewed the research on peer support and

found

: “The literature [on peer support] that does exist tends to be descriptive and lacks experimental rigor.”4 A study on veterans found there was “no short-term incremental benefit (or harm) from peer services beyond usual care.”

A 2011 study found “[E]vidence supporting the effectiveness of peer-provided services lags behind their rapid growth. . . Reviews have found little evidence of the superiority of peer-provided services for a wide range of outcomes.”6 The Centers for Medicaid and Medicare Services (CMS) studied the cost of peer support and concluded “The most important finding for policy makers is the significantly higher total Medicaid cost for those who used peer support services.”7 The other finding that reached statistical significance was that those who received peer support needed more crisis stabilization services than those who did not. The Cochrane Collaborative concluded, “Involving consumer-providers in mental health teams results in psychosocial, mental health symptom and service use outcomes for clients that were no better or worse than those achieved by professionals employed in similar roles, particularly for case management services.”

CMHS’s 76-page publication Consumer-Operated Services: The Evidence lists multiple studies on what paid peer support is, its history, its popularity, its importance, how to expand its usage, and what its future will be. It does not, however, include good evidence that paid peer support improves meaningful outcomes in people with serious mental illness.9

Evidence Presented by Those Who Receive Funds for Providing Peer Support

Trade associations representing paid peers have created reports on their own programs and that of others and presented them as evidence that paid peer support works. The New York Association of Psychiatric Rehabilitation Services (NYAPRS), a trade association of organizations providing non-medical recovery services distributed a memo its director wrote to the Assistant Secretary of Mental Health and Substance Use Disorders, Dr. Elinore McCance-Katz that included many of these self-reports.10 None compared the addition of support provided by paid peers to the addition of support provided by non-peers, families, or other paid professionals; therefore, it cannot be concluded that peers have a ‘special-sauce’ that makes them better than others at providing services. Put another way, would peer-run housing, outreach, and respite centers have better results if not run by peers? That question remains unanswered.

The NYAPRS noted that one independent study on hospitalization did find that “Participants who were assigned a peer mentor had significantly fewer rehospitalizations.”11 However, that study did not compare the addition of a paid peer with the addition of a paid professional. As the study authors conceded, “We cannot conclude that differences in outcome were attributable to the training and skills of the mentors rather than simply to the presence in he patients’ lives of a helpful and interested person.” They went on to reveal that “34% who were assigned a peer mentor had no contact with their mentor during the study period” and “For the peer mentor group, a subanalysis showed no significant association between the number of mentor contacts and hospitalization outcomes.”

Most of the papers presented by the peer support trade associations to make the case that paid peer support is effective are not independent, compare the addition of peer support to the addition of nothing, do not include control groups, do not meet minimum scientific requirements, or do not indicate the diagnosis of those being served, for example, whether they are persons with serious mental illnesses, substance use disorders or mild anxiety, so no conclusions about the value of paying peers to provide support for people with serious mental illness can be drawn. The studies often do not measure improvements in meaningful hard measures like rates of homelessness, arrest, incarceration, suicide, victimization, and needless hospitalization and are often anecdotal or simply newspaper stories reiterating what the proponents told reporters.

In spite of a paucity of evidence, paid peer support for people with mental illness has been robustly promoted by SAMHSA, CMHS, and those who are paid to provide peer support. CMHS funds peer supporters, peer travel, peer conferences, peer webinars, and peer support organizations and coerces states to use mental health block grants for peer support.12 CMHS is still headed by a peer and focuses extensively on the promotion of paid peer support. Despite its own research, SAMHSA claims that peer support “play[s] an invaluable role in recovery . . . [and provides] important resources to assist people along their journeys of recovery and wellness” (Emphasis added).13 SAMHSA and the Western Massachusetts Recovery Learning Center set up a group specifically to promote paid peer support, but it too was forced to recognize the paucity of evidence for peer support stating “There's a great deal of research “out there” on peer-to-peer support. Unfortunately, some of it is less than ideal because it starts with a hypothesis that doesn't represent full understanding of what peer-to-peer support is intended to be.”14

Benefits of Being Hired to Provide Paid Peer Support and of Receiving Peer Support

While I am not aware of data, getting hired as a paid peer support worker likely increases the self-esteem of those being hired-an important factor that likely facilitates their own recovery. It also increases their economic independence.

There may be benefits to receiving peer support. Talking to anyone-including someone who has been through what you have been through-does have rewards. With the caveat that the data provided by those who deliver paid peer support come from “studies” that lack control groups and are not independent, they do report increases in soft measures such as “hopefulness,” “self-esteem,” “empowerment,” “social network,” “regard,” “inclusion,” and “acceptance,” even while silent on the hard, meaningful metrics including rates of homelessness, arrest, needless hospitalization, incarceration, suicide and victimization.  

Two unresearched potential side-effects of peer support

There can be two side-effects of paid peer support. Those that can affect the recipient of paid peer support and those that affect the mental health system.

Those who receive paid peer support can feel pressured to abandon proven medical treatments, as there is an anti-medication anti-medical model disposition within parts of the peer community formerly centered around Thomas Szasz, Peter Breggin, L. Ron Hubbard, and now centered around Robert Whitaker.

The industry trade association for paid peers, the National Coalition for Mental Health Recovery (NCMHR) is not known to believe mental illness exists. It shuns use of the term “mental illness,” puts scare quotes around it, and substitutes it with phrases such as “people ‘labeled’ with mental illness,” or “people in extreme states of consciousness.”15 The peer support industry’s annual Alternatives Conference often include workshops on the side effects of medication and how to go off them.16 The conference does not include workshops on how to find the best medications. The NCMHR website lists multiple resources on how to go off medications, the side effects of medications, and promotes a psychology program invented by its founder, Emotional CPR (eCPR) as an alternative to medical care.17

When the Helping Families in Mental Health Crisis Act was introduced it included provisions requiring federally funded “peer support specialists” to work “in consultation with and under the supervision of a licensed mental health or substance use treatment professional.”18 As a result of lobbying by the peer support industry, that provision was removed from the version that was signed into law.19 Peer support orthodoxy supports the “recovery model” over the medical model. A basic tenet is that people, even those who are psychotic, should self-direct their own care. That doesn’t always end well.*

Paid peer support can also have negative effects on the treatment system. Systemically, the funds that go to fund the paid peer support industry are often used to prevent care of the sickest. The importance of this side-effect cannot be overstated. Before becoming Assistant Secretary of Health and Human Services Dr. McCance-Katz wrote about the corrosive influence of the peer industry leaders on SAMHSA’s efforts to improve care for the seriously mentally ill: “There is a perceptible hostility toward psychiatric medicine: a resistance to addressing the treatment needs of those with serious mental illness and a questioning by some at SAMHSA as to whether mental disorders even exist.”20

Fungible federal and state funds give the paid peer trade associations disproportionate influence over policy and that influence is often used to prevent implementation of evidence based practices that help the most seriously mentally ill. For example, the leaders of the paid peer industry organize support for policies that force hospitals to close, prevent the use of assisted outpatient treatment (AOT), prevent the use of electroconvulsive therapy (ECT), prevent parents from getting information about mentally ill loved ones, prevent needed reform of civil commitment laws, prevent focusing mental health resources on the seriously ill, support diverting mental health resources to programs that lack evidence, and support making it easier for the seriously mentally ill to purchase guns.21

Conclusion

The new Assistant Secretary has spoken about requiring peer support specialists to work in concert with medical experts.22 She has also taken steps to

eliminate

non-evidence based programs from SAMHSA and to focus it on evidence-based programs that help the seriously mentally ill.23 But the leadership of CMHS has not changed from the previous administration and is still putting out contracts that are burdened with the expensive requirement to hire peers without sufficient evidence they improve outcomes or do so better than non-peers.24

Using scarce resources to support programs like paid peer support that lack evidence they help-while so many proven programs go unfunded-makes little sense.* Research should be conducted to determine if paid peer support improves meaningful metrics in people with serious mental illness and if provision of those services by paid peers is superior to provision of the same services by others. Paid peer support should not be expanded until that research is clear. If expanded, then steps should be taken to ensure that the peer support trade associations do not lobby to make treatment for the seriously mentally ill more difficult.

 

* Examples of programs proven to improve meaningful metrics in people with serious mental illness include appointments with psychiatrists, hospitalization, medication, electroconvulsive therapy, assisted outpatient treatment, clubhouses, assertive case management, intensive case management, supported housing, psycho-social rehabilitation, and others.

Disclosures:

DJ Jaffe is the author of  Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. He is Executive Director Mental Illness Policy Org, a non-partisan think-tank on serious mental illness funded by people with and families of the seriously mentally ill only. Twitter: @MentalIllPolicy.

References:

1. Center for Mental Health Services (CMHS), Consumer-Operated Services: The Evidence, HHS Publication No. SMA-11-4633 (Rockville, MD: Center for Mental Health Services, SAMHSA, 2011).
2. Dixon L, Perkins D, Calmes C. Guideline Watch: Practice Guideline for the Treatment of Patients with Schizophrenia. Washington, DC: American Psychiatric Association. September 2009.
3. Lloyd-Evans B, Mayo-Wilson E, Harrison B, et al. A Systematic Review and Meta-Analysis of Randomised Controlled Trials of Peer Support for People with Severe Mental Illness.”BMC Psychiatry.2014;14.
4. SAMHSA, Bringing Recovery Supports to Scale (SAMHSA-BRSS), Equipping Behavioral Health Systems & Authorities to Promote Peer Specialist/Peer Recovery Coaching Services,

Expert Panel Meeting Report

, Rockville, MD: Bringing Recovery Supports to Scale, SAMHSA, August 17, 2012.
5. Eisen S, Schultz M, Mueller L, et al. Outcome of a Randomized Study of a Mental Health Peer Education and Support Group in the VA. Psychiatric Services. 2012;63:1243-46.

6. Sledge WH, Lawless M, Sells D, et al. Effectiveness of peer support in reducing readmissions of persons with multiple psychiatric hospitalizations. Psychiatric Services. 2011;62:541–544.
7. Landers G, Zhou M. The Impact of Medicaid Peer Support Utilization on Cost. Medicaid & Medicare Research Review. 2014;4(1): E1–E14.
8. Pitt V, Lowe D, Hill S, et al. Cochrane Collaborative, “Consumer-Providers of Care for Adult Clients of Statutory Mental Health Services.” Cochrane Database of Systematic Reviews no. 3 (2012),
9. Center for Mental Health Services (CMHS), Consumer-Operated Services: The Evidence, HHS Publication No. SMA-11-4633 (Rockville, MD: Center for Mental Health Services, SAMHSA, 2011).
10. Rosenthal H. Memo to Dr. Elinore McCance-Katz “Input to the Interdepartmental Serious Mental Illness (and Serious Emotional Disturbance) Coordinating Committee (ISMICC)” October 10, 2017.
11. Sledge WH, Lawless M, Sells D, et al. Effectiveness of peer support in reducing readmissions of persons with multiple psychiatric hospitalizations. Psychiatric Services. 2011;62:541–544.
12. Jaffe DJ. Insane Consequences: How the Mental Health Industry Fails the Mentally Ill. Prometheus, 2017;97-110. Mental Illness Policy Org., “How SAMHSA Mental Health Block Grant Guidance and Application Form Encourages States to Not Use Block Grants for the Most Seriously Ill,” Mental Illness Policy Org., 2013.
13. Substance Abuse and Mental Health Services Administration (SAMHSA), “SAMHSA’s Working Definition of Recovery Updated,” SAMHSA (blog), March 23, 2012.
14. Peer Support Resources, “The Evidence,” Peer Support Resources, http://www.psresources.info/the-evidence (accessed December 25, 2017. Taken offline).
15. Thomas TT. Healing Voices, Let’s Change the Conversation. Digital Eyes Film, November 15, 2017, National Coalition for Mental Health Recovery, “Coalition of Individuals with Psychiatric Labels Supports Protestors’ Efforts to “Occupy” the American Psychiatric Association Convention https://www.ncmhr.org/press-releases/5.3.12.htm (accessed 2/8/18). Murphy, Tim, “Opening Statement of the Honorable Tim Murphy Subcommittee on Oversight and Investigations Hearing on “Examining SAMHSA’s Role in Delivering Services to the Severely Mentally Ill” May 22, 2013. https://mentalillnesspolicy.org/wp-content/uploads/tim-murphy-statement-5.22.13.pdf (accessed 2/8/2018). Jaffe, DJ Insane Consequences, pages 111-116.
 16. Hall W. Transcript of Will Hall Keynote Speech at Alternatives 2012. Madness Radio. Torrey, E. Fuller. “Improving the Mental Health System: Who is Responsible?” Psychiatric Times. 12/24/14. http://www.psychiatrictimes.com/cultural-psychiatry/improving-mental-health-system-who-responsible (accessed 2/8/2018).
 17. NCMHR, “The Urgent Necessity for More Non-Drug Alternatives in Mental Health Care,” Testimony by Lauren Spiro. Washington, DC, undated.  https://www.ncmhr.org/downloads/TheUrgentNecessityForMoreNon-DrugAlternativesInMHCare.pdf (accessed February 10, 2018). NCMHR, Emotional CPR, Undated. https://www.ncmhr.org/emotional-cpr.htm (accessed February 10, 2018).
18. Helping Families in Mental Health Crisis Act of 2015, H.R. 2646, 114th Cong. (2015).
 21st Century Cures Act, H.R. 34, 114th Cong. (2015), https://www.congress.gov/bill/114th-congress/house-bill/34/text (accessed February 11, 2018.)
19. McCance-Katz E. The Federal Government Ignores the Treatment Needs of Americans With Serious Mental Illness.” Psychiatric Times. April 21, 2016, http://www.psychiatrictimes.com/depression/federal-government-ignores-treatment-needs-americans-serious-mental-illness (accessed February 11, 2018).
20. Marsh, V. (ex- Executive Director of NCMHR), “The Murphy Bill, HR 2646-a Heinous Piece of Legislation-is Coming to a Vote. Act Now,” Mad in America, July 5, 2016, http://www.madinamerica.com/2016/07/hr-2646-coming-to-a-vote (accessed February 11, 2018). MindFreedom International, “Stop FDA from Down-Classifying the Shock Device to a Class II Device. Stop Shock Treatment,” Change.org, https://www.change.org/p/fda-stop-fda-from-down-classifying-the-shock-device-to-a-class-ii-device-stop-shock-treatment (accessed February 11, 2018). Dan Fisher, (ex-Executive Director, NCMHR and National Empowerment Center), letter to the editor, “Outpatient Commitment Would Harm Patients in Need,” Boston Globe, January 1, 2013, http://www.bostonglobe.com/opinion/letters/2013/01/01/outpatient-commitment-would-harm-patients-need/EplTlGyIBg66QTngV9iEVJ/story.html (accessed February 11, 2018).  NCMHR, “Mental Health Advocates Decry Forced Treatment Provision in ‘Doc Fix’ Bill,” press release, March 28, 2014, http://ncmhr.org/press-releases/3.28.14.htm (accessed December 24, 2017).  NCMHR, “Mental Health Advocates Oppose Rep. Tim Murphy's Bill for Promoting Forced "Treatment Over More Effective and Less Expensive Voluntary Care,” press release, June 9, 2015, https://ncmhr.org/press-releases/6.9.15.htm (accessed December 23, 2017). DJ Jaffe, “Insane Consequences: How the Mental Health Industry Fails the Mentally Ill.”
21. Manhattan Institute, Mental Health Care, Symposia with Dr. Elinore McCance-Katz,  DJ Jaffe, Pete Earley, Howard Husock. October 28, 2017. CSPAN Video: https://www.c-span.org/video/?435246-1/manhattan-institute-mental-health (accessed February 10, 2017).
22. McCance-Katz E. “Statement of Elinore F. McCance-Katz, MD, PhD, Assistant Secretary for Mental Health and Substance Use regarding the National Registry of Evidence-based Programs and Practices and SAMHSA’s new approach to implementation of evidence-based practices (EBPs)” Rockville, MD. January 11, 2018. https://www.samhsa.gov/newsroom/press-announcements/201801110330 (Accessed February 10, 2018).
 23. CMHS, “Early Diversion Grants (initial announcement),” Rockville, MD.  January 4, 2018. https://www.samhsa.gov/sites/default/files/grants/pdf/final-early-diversion-foa1-4-18.pdf (accessed February 10, 2018).