The following by DJ Jaffe originally appeared in a blog by Pete Earley.
I have been asked whether people should support the Helping Families in Mental Health Crisis Act of 2015 (H.R. 2646), which will be voted on in the House of Representatives after the July 4th recess. At this point, the decision is not, "How does this bill compare to previous versions of the bill?" It is clearly very much weaker. The question is: what is the net impact on "adults" with "serious" mental illness, the population we advocate for? Positive or negative?
Mental Illness Policy Org. strongly supports Congress passing this bill.
Others may disagree with our conclusion because they are focused on different populations. Mental Illness Policy Org is focused on the 4% who have the most serious mental illnesses, primarily schizophrenia and treatment-resistant bipolar. Most community programs refuse to serve these "high-needs" patients. The seriously ill are the ones most likely to become victimized, incarcerated and homeless. Put another way: throwing money at mental health does little for the seriously ill. Schizophrenia and bipolar cannot be predicted or prevented. The treatments adults with them need, for example hospital care, is much different from children with mild ADHD or adults with "lived-experience" need. So that is the lens we look through to analyze the bill.
Rep. Murphy, who originally authored the bill, is a hero who never gave up advocating for the most seriously ill. But late in the process, Energy and Commerce Committee chair Fred Upton, allowed Ranking Member Frank Pallone to insert numerous provisions -- some merely wasteful, others problematic -- at the behest of the mental health industry and to remove numerous provisions that would require them to serve adults with serious mental illness. But there are still provisions that are very helpful to the seriously ill.
Rep. Murphy's bill will be voted on by the entire house after July 4th recess. No news on when or if the Senate will consider The Mental Health Reform Act (S. 2680), a semi-companion bill.
Following are provisions still in the bill that could affect adults with serious mental illness grouped into four subjective categories which you may agree or disagree with.
- Definitely good provisions
- Potentially beneficial provisions that really can't be judged
- Probably Useless provisions
- Potentially harmful provisions
Definitely good provisions
Mental Health Block Grants. The bill states explicitly, as the first requirement, that mental health block grants are required to serve adults with serious mental illness and children with serious emotional disturbance. This is slightly backed off of with other language in the bill, but if paid attention to, could actually be very significant. The mental health block grants are roughly $450 million that go to states. They were always legislatively required to serve seriously ill adults and children, but SAMHSA and CMHS which oversaw them, took multiple steps to ensure they were not spent on seriously ill adults or on evidence based practices. By making it much clearer in the legislation that they are intended for the seriously ill, it could start to bend the curve.
AOT: Extends and funds Assisted Outpatient Treatment by providing an additional $5 million for 2018, and an average of $18.5 million for 2019-2022, for a total of $79 million (Previous legislation provide $15 million/year for 2015-2018.) This is definitely good news as AOT is proven to reduce homelessness, arrest, incarceration in the 70% range for people with SMI, something no other program has done.
ACT: The bill provides $5 million a year for 2018-2022 ($25 million total) for Assertive Community Treatment. In selecting who gets the grant the Asst. Sec. "may" give special consideration to the potential of the program to reduce hospitalization, homelessness, and criminal justice involvement. That is good news and will likely benefit SMI.
Crisis Intervention Training for Police. Authorizes $9 million for 2018-2020 ($27 million) for CIT Training. Crisis Training is needed because police step in when the mental health system refuses to serve the seriously ill who are not well enough to volunteer, a very common occurrence that is encouraged by SAMHSA, CMHS, and many in the mental health community.
Medicaid Treatment: Allows Medicaid to reimburse for physical health and mental health services received within same day, something that was previously prohibited. This is new and good.
Medicaid Hospitalization. Allows states with 1115 Waivers to use Medicaid funds for Hospitalization as long as doing so does not increase costs. It also codifies that certain managed care plans can use Medicaid funds to provide 15 days per month of hospital care. This is good, but is not new. A regulation previously accomplished this. The provision still leaves most who need hospital care unable to get it and it is disappointing that mental health organizations that claim they want parity, argued against allowing access to hospitals for the seriously ill. Achieving parity can be accomplished by eliminating the IMD Exclusion. Few thought Rep. Murphy would get anything done about the IMD Exclusion, so kudos to him and Rep. E. B. Johnson (D., TX) who has long championed this.
Oversight and Mental Health Policy Lab. The Asst. Sec. will have offices to collect data on metrics like homelessness, criminal justice involvement and evaluate programs related to serious mental illness. This is good.
Workforce Development. There is $12 million a year for five years ($60 million) to train psychologists to work with the seriously ill, but no requirement they work with the seriously ill once trained. However, this is still likely to be beneficial. There are other workforce training grants, but most do not require the people to be trained in serious mental illness or work with the seriously ill. They will likely not help adults with serious mental illness.
Adult Suicide There is an Adult Suicide grant of $30 million a year ($150 million total) and another grant of $9 million a year for 2017-2021 ($45 million total) for suicide in any age that was previously limited to youth suicide. While suicide is a "leading cause" of death in children, children rarely die of anything. 5,500 people under 24 die of suicide and 37,500 over 24 die of it. It is much more common in adults, therefore it is appropriate to spend funds on adults where suicide is most common. One caveat is that research does not show these funds have an impact on actually reducing suicide.
Potentially beneficial provisions, that really can't be judged yet
Assistant Secretary. Creates an Asst. Sec. of Mental Health to oversee and coordinate federal mental health policy. On the plus side, it is "preferred" that the Asst. Sec. be a psychiatrist, osteopath or psychologist. The Asst. Sec will have a deputy who runs SAMHSA. The Asst. Sec. will oversee SAMHSA and the Center for Mental Health Services (CMHS) activities, establish priorities, performance metrics and standards for grant programs. The Asst. Sec. has to develop a strategic plan and one component of the plan has to be improving services for the seriously ill, but no metrics (ex. reducing hospitalization or homelessness) are specified. On the negative side, in my opinion, but maybe not yours, is that part of the strategic plan is to support certified peer specialists. (See below.) The bill does not require the Asst. Sec. to focus on SMI and does not define a standard of evidence. So it is hard (at least for me) to judge how this will play out. It all depends who is chosen. NIMH had the same lack-of-focus problems that SAMHSA and CMHS have. They started to get fixed when Dr. Insel took the helm. No new legislation was needed. Whether SAMHSA and CMHS get fixed is almost solely dependent on who is chosen for this position and if they are willing to replace the current heads. And with a presidential election coming up, there is no saying who the Assistant Sec. will be. I strongly suggest you read this article about the problems at SAMHSA and CMHS that need fixing.
Interdepartmental Serious Mental Illness Coordinating Committee. Establishes a high-level cross-government committee to issue a report and recommendations specifically on improving meaningful metrics in people with serious mental illness. Bringing DOJ, AG, DOE, VA, DOD, etc. together can be good. I do not know if these committees will result in progress or another report to shelve.
National Registry of Evidence Based Programs (NREPP). The legislation turns over to the Asst. Secretary the responsibility for managing the database of effective programs previously administered by SAMHSA. The SAMHSA database has historically ignored serious mental illness and ignored meaningful metrics like reducing homelessness, arrest, and incarceration. It has also been devoid of independent evidence and is largely a collection of educational modules. There is a requirement for the Assistant Secretary to set priorities but no requirement those priorities be the seriously ill or meaningful metrics, so it is hard to see how this will play out. Again: it depends who the secretary is.
Youth and Teen Suicide. There is $35 million a year ($175 million) allocated to youth suicide, the group least likely to commit suicide. There has not been evidence that these programs help.
Innovation Grants (2). Provides $7 million over three years ($21 million total) for evaluating promising models that enhance prevention, diagnosis, intervention, treatment and recovery of mental illness, serious emotional disturbance, substance use disorders or co-occurring disorder or to integrate health and mental health. Serious mental illness is not mentioned so it is unlikely to affect seriously ill. A second grant for the same amount ($7 million over three years, $21 million total) is for scaling up evidence based programs for screening, diagnosis and treatment. The seriously mentally ill are one of the listed populations that can be served, but the grants will go mainly to training staff.
Probably Useless Provisions
Bed Registry or Community Crisis Response Plan. Allocates $5 million a year ($25 million total) for 2018-2022 for grants communities can apply for to create a Crisis Response Plan (agreements between providers and criminal justice, etc.) or a registry of existing empty beds. There is not enough information to judge exactly what the crisis response plans are other than plans for better coordination between inpatient, outpatient and criminal justice. We do not believe the bed registry will have any significant impact at all. There are few empty beds to register and they are often far away and hospitals won't want to facilitate transportation to them. Bed Registries for housing have not worked, because facilities merely refuse or forget to enter beds as they prefer to keep them available for their own clientele. We don't know, but hope, if any bed registries are created that the information be publicly accessible so advocates can document the shortage. The money allocated to this would be better spent on treatment for people with serious mental illness.
PAIMI: The bill does not fix PAIMI or end federally funded anti-treatment anti-family advocacy by PAIMI. The bill prohibits PAIMI from using federal funds to lobby, but all federally funded programs are already prohibited from doing that. The bill does establish a grievance procedure for complaints about PAIMI, but there already is a grievance procedure and it hasn't worked. Further, anyone who brings a grievance will be going up against professionally trained lawyers paid for with government funds, making it an uneven battle and success unlikely. We don't believe these provisions will have any impact.
HIPAA: Leaves HIPAA as is. It requires new HIPAA regulations to be developed, but we believe the problem is within the law and that cannot be regulated around. This is especially true as Congress placed limits on how far the regs can go. The bill also provides $10 million through 2022 to educate health care providers and families about HIPAA. But again, the law prevents most disclosures, so educating about what can't be done, is not likely to have an impact. (Note. Those who are not on our side oppose the bill because they believe it does change HIPAA. They could be right, but I don't see how.) This money would be better spent on treatment for the seriously ill.
CMHS: The bill encourages the Center for Mental Health services to not focus on seriously mentally ill. It is required to to engage in the "promotion of mental health," "promote resiliency," and for giving consumers a greater say in policy. This will hurt care of the seriously ill by driving services away from the seriously ill and giving those without medical degrees (consumers) a larger say in medical mental illness policy. (See below)
Parity Compliance. Will issue new "guidance" on reports on parity compliance, but does not segregate out the seriously ill or require the federal government to end discriminatory provisions in Medicaid and Medicare that provide better care for those with physical illnesses than serious mental illnesses. There is no enforcement mechanism, so it may not affect how insurance companies operate.
Children's Programs. There are numerous children's programs. Some are important to help children who are seriously ill and others are not. We did not review those in detail.
Potentially Harmful Provisions
Peer support workers are trying to do the right thing. Help others. But there is not evidence that peer support improves meaningful metrics like reducing incarceration, SAMHSA reported, "The literature (on peer support) that does exist tends to be descriptive and lacks experimental rigor." And there is not evidence that peer-support workers are better than non-peer workers as no comparison has been done. There is extensive evidence the leaders of the peer networks mobilize members to lobby against improving services for the seriously ill. As an example, their trade association is lobbying against passage of Rep. Murphy's bill because among other things, it supports making hospital beds available. They previously lobbied against the requirement that programs have evidence before receiving funding. There are several provisions in the bill concerning peer support:
Best Practices in Peer Support Study. The Comptroller General will study peer support in 10 states to identify 'best-practices,' such as how many hours they work. However, the study does not include whether peer support works, i.e., improves meaningful outcomes (homelessness, arrest, violence, etc.) in people with serious mental illness better than non-peer or professional support. The net effect of the study could be the development of best practices and expansion of a program that doesn't work. It could ingrain a practice that does not improve outcomes. The bill should have determined if peer support improves outcomes more than the same service from others (say social workers or families) or perhaps compared peer support to ACT or AOT to determine which should be expanded.
Peer support expansion: Authorizes grants to colleges of $10 million a year for 5 years ($50 million) to increase behavioral health paraprofessionals, including peers. There is no evidence their services help improve meaningful outcomes and no requirement those trained serve the seriously ill.
There are many other provisions than those described above. To us, the problematic provisions are trumped by the useful ones so we urge support of this bill. We also urge the Senate to dramatically strengthen the Mental Health Reform Act to focus it on helping the most seriously ill.
Finally, I do want to restate my admiration for Rep. Tim Murphy who at every step of the way has championed better treatment for the seriously ill. But he is only one of 435 Representatives, and too many of the others, especially Democrats, were unwilling to stand up to the mental health industry which wants to continue to receive mental health funds free of any obligation to help the seriously ill adults or use them for evidence-based practices.
DJ Jaffe is Executive Director of Mental Illness Policy Org.