(11-30-16) Rep. Tim Murphy’s Helping Families in Mental Health Crisis Act is poised to become a federal law.
By a 392-26 vote late Wednesday, the House passed the 21st Century Cures Act, a massive $6.3 billion health bill, that included Murphy’s legislation. The Senate is expected to approve the legislation shortly before sending it to President Obama to sign before leaving office.
“This is a huge victory,” Andrew Sperling, NAMI’s director of advocacy, wrote in an email. “The entire enterprise could have easily collapsed given the election results.”
D. J. Jaffe, who publishes the website Mental Illness Policy Org., and was active behind the scenes pushing the bill, called Murphy a “hero” and praised the Pittsburgh Republican and Sen. John Cornyn (R-Texas) for their tenacity. Both endorsed greater use of Assisted Outpatient Treatment, which is strongly supported by Jaffe.
“AOT was a great win in this legislation,” he said. “Now, the question is if the new assistant secretary (for mental health) will drain the swamp at SAMHSA (Substance Abuse and Mental Health Services Administration) and make that agency focus on the seriously mentally ill.”
The Treatment Advocacy Center, which supports AOT legislation, was a vigorous champion of Murphy’s bill from its first draft.
Murphy began laying the groundwork for his bill in March 2013, three months after Adam Lanza’s 2012 attack on the Sandy Hook Elementary School that left 28 dead, including him. I was questioned at his first House session about problems my family faced trying to get help for my son.
Murphy’s original bill faced strong opposition from Democrats and a slew of mental health organizations, including Mental Health America, who claimed it would eliminate and roll back hard-won civil rights protections. Some mental health groups scoffed at Murphy’s chances of getting any legislation passed. The National Alliance on Mental Illness was the only major group that supported Murphy’s bill. (see correction at end of blog.) It wasn’t until after Murphy had collected more than a hundred co-sponsors that his critics became alarmed.
Supporters welcomed Murphy’s legislation, saying it was one of the first that recognized the problems that parents and families faced, rather than focusing primarily on the rights of individuals who were ill. Because much of what Murphy first proposed was nearly identical to reforms that Dr. E. Fuller Torrey had been pushing for years, I once dubbed the bill “Torrey’s revenge” against SAMHSA and mental health lobbying groups that had widespread support in Congress.
Democrats kept Murphy from getting his legislation passed during the 2013-14 session by introducing their own bill specifically to block his. But during the current session, Rep. Fred Upton (R-MI), was able to get a much rewritten version passed out of his House committee by a unanimous vote of 53-0 vote. Senators Chris Murphy (D-Conn.) and Bill Cassidy (R.-La.) initiated the fight for Murphy’s bill in the Senate. Their efforts were bolstered when Sen. Lamar Alexander (R-Tenn.), the leader of the Senate Health Committee (HELP), took charge of their legislation. Next came, Sen. John Cornyn (R.Texas), the Senate Majority Whip, who pushed the Senate version further. During the Thanksgiving holiday, all sides agreed to merge Murphy’s bill and parts of Cornyn’s into the 21st Century Cures Act, a major bill that had widespread support in both parties and the White House. If the Senate version of Murphy’s bill would have not been attached to the Cures Act, it probably would have died. Merging it with the Cures Act required another House vote.
The highly revised language in the Murphy bill was eventually supported by Mental Health America and several of its earlier critics who were able to weaken some of the areas that they found most offensive.
The 21st Century Cures Act, which you can read here, is 996 pages and confusing even if you have followed this ongoing debate closely, especially because much of it concerns changes large and small at the National Institutes of Health and the Food and Drug Administration. It’s those changes, which were heavily lobbied for by the pharmaceutical industry, not Murphy’s mental health bill, that was the major focus of debate yesterday in the House chamber.
Murphy’s bill was heavily revised during his three year battle to make it more palatable to critics. But he succeeded in keeping several of his most controversial changes in place.
SAMHSA — Murphy initially wanted to refocus the Substance Abuse and Mental Health Services Administration because he said the agency focused more on mental health than mental illness, was wasteful, and funded programs that encouraged patients to stop taking medications and were anti-psychiatry. He proposed shifting SAMHSA funds to the National Institute of Mental Health.
Under the 21st Century Act, the government will elevate the importance of mental health by creating an Assistant Secretary for Mental Health and Substance Use inside the Department of Health and Human Services, giving mental health a much higher bureaucratic presence. While the bill doesn’t require that the new secretary, a patronage job, be a psychiatrist as Murphy initially wanted , the law creates a new position called Chief Medical Officer at SAMHSA who must be one. (SAMHSA was led recently by a lawyer and employed no psychiatrists.) The bill also instructs SAMHSA to focus more of its programs and funds on the “serious mentally ill” and spend its dollars on “evidence based practices.”
Although the final bill didn’t go as far as many of his supporters wanted in spanking SAMHSA, consider this a win for Murphy.
HIPAA — Murphy heard testimony from parents, including my friend, Pat Milam, who were outraged because they were refused medical information because of the Health Insurance and Portability Accountability Act (HIPAA) when their sons and daughters were admitted into a hospital. Murphy wanted to change the law to permit a loved one limited access to medical information even if the patient didn’t want it released. That suggestion alarmed disability groups and consumer organizations. The new law requires the Health and Human Services to undertake a review of its current HIPAA regulations, knowing that the “congressional intent” is for HHS to “clarify” the regulations with an eye toward finding a way to release some information to parents if it is deemed to be in the patient’s best interest.
This could be another major win for Murphy if HHS actually decides to loosen the regulations, but the act’s language has been watered-down to the point that it isn’t currently clear — at least to me — if anything beyond a study and review of HIPAA regulations is required.
AOT –– In addition to HIPAA, the next most controversial Murphy push was for greater use of Assisted Outpatient Treatment. Although 46 states already have approved AOT, funding is rarely provided and many mental health providers resist using it because they do not like the idea of forcing someone to accept treatment by appearing before a judge and being subjected to a court order. AOT is an evidence based practice, according to the government, and has been proven to help save lives and tax dollars, but over the years, it has become a symbol to many consumer groups of much-hated forced government compliance. Murphy initially wanted to penalize states that didn’t adopt and encourage use of AOT but there was such a backlash that he cleverly revised tactics and instead offered to reward states with a higher percentage of block grant funding if they stepped up use of AOT. Murphy gained an important AOT ally in the Senate in Cornyn, a former prosecutor, state attorney general and judge, who supports AOT, and the bill reflects Cornyn’s influence. Under the new law, AOT will receive more funding and for a longer period — up to 2022.
Mark this a definite win for Murphy and his supporters.
PAIMI –the Protection and Advocacy for Individuals with Mental Illness Act (PAIMI programs) are funded by the government to safeguard the rights of persons with mental illnesses and disabilities. Over the years, many of these groups morphed into Disability Law Centers and broadened their reach beyond monitoring how patients were treated in institutions, including jails and prisons. Some PAIMI groups actively worked against passage of AOT laws, which outraged Murphy and his supporters. He initially wanted to strip much of the PAIMI programs’ funding, but met Democratic opposition, so he relented and instead wrote language aimed at limiting the powers of PAIMI advocates by restricting their authority. They would only be permitted to investigate cases of abuse and neglect and would be specifically banned from lobbying public officials and from “counseling an individual with a serious mental illness who lacks insight into their condition on refusing medical treatment or acting against the wishes of such individual’s caregiver.” That sentence was aimed at William Bruce situations where a PAIMI advocate told Joe Bruce’s son, William, what to say in order to be discharged even though his medical team considered him unstable. William was released and murdered his mother.
The new act doesn’t include any specific Joe Bruce inspired wording. Instead, it instructs the new Assistant Secretary to undertake a study of PAIMI programs to determine if federal funds are being spent on investigations of “alleged abuse and neglect of persons with mental illness; investigations into the availability of adequate medical and behavioral health treatment; and investigations of the denial of rights for persons with mental illnesses.” That study also will examine if PAIMI organizations are in compliance with “the Federal prohibition on lobbying.” Put simply, the new law does not force PAIMI organizations to change how they operate but the threat of a federal study that will look at how PAIMI groups are spending federal funds is considered both instructional and a warning.
Although this language is considerably diluted from the original, it’s another win for Murphy.
IMD Exclusion – Current federal law imposes a 16-bed limit for inpatient beds. This limit was designed to prevent states from re-opening large hospital warehouses. The Feds refused to allow Medicare and Medicaid payments to larger than 16 bed facilities. Murphy originally called for repealing the so-called IMD exclusion as long as a facility kept patients less than 30 days. But that idea ran into opposition, especially when both sides began calculating how much lifting the ban could cost Medicaid.
The new language calls for a study of the IMD exclusion, providing both sides a way to avoid the issue.
I’ve only touched a few high points of the proposed law. In addition to Murphy’s bill, Cornyn blended his Mental Health and Safe Communities Act into the mix. I testified in favor of it because it funds Crisis Intervention Team training, mental health courts, and a slew of other jail diversion programs that should help our country begin curbing the inappropriate incarceration of individuals with mental illnesses in our jails and prisons. Cornyn, who is familiar with the Bexar County model in San Antonio, which is considered the gold standard at jail diversion, made certain these important programs were included in the act after they were removed from Murphy’s bill when it was first introduced in the Senate. Murphy had endorsed the same criminal justice reforms in the House bill.
The Cures Act also includes funding for Mental Health First Aid and allocates millions for educational and suicide prevention programs that were pushed largely by Democrats and were added during give-and-take with Murphy and Cornyn.
It’s actually a bit unfair to compare what Murphy initially proposed and what eventually was passed. Like selling a car, you begin with a price that you don’t expect to get and negotiate. But there are two things that no one can argue against.
The first is that the Helping Families In Mental Health Crisis portion of the bill is the first major reform of our mental health system in decades.
The second is that Rep. Tim Murphy, the only practicing psychologist in Congress, was tireless, relentless, determined and dedicated to getting reforms passed. While Sen. Cornyn deserves praise for getting the criminal justice package pushed through, the reform of SAMHSA and the other changes that I’ve identified never would have gotten off the ground without Murphy. Few House members would have had the fortitude to continue pushing for controversial mental health reforms during what became an often vicious process.
Love him or not, Rep. Tim Murphy has accomplished much of what he proposed three years ago and in today’s Congress that is a monumental achievement.
* Additions:
I asked Michael Fitzpatrick, the former executive director of NAMI, his opinion of Murphy’s mental health bill as written in the Cures Act because he spoke with me at the first congressional session that Murphy held and he was the first to announce NAMI’s support for the congressman’s efforts.
This legislation will do some good. It creates a new comprehensive focus on serious mental illness. It has really brought together the various factions within the mental illness community. This is a significant outcome in of itself.
You have captured the essence of the bill. Like all complex pieces of legislation the proof of impact will be its implementation over time.
The bill creates an Assistant Secretary for Mental Health and Substance Abuse and a Chief Medical Officer who must be a psychiatrist. It forces SAMHSA to focus on evidence based and scientifically sound programs. It focuses the federal Block Grants to states on serious mental illness. It does provide some help with HIPAA. It directs the HHS Secretary to clarify circumstances where families may access protected health information about their family member with serious mental illness. It does remain to be seen how this will play out. It also requires that HHS develop HIPAA training for providers and others. While these steps are not what I had hoped for. They are significant advances that again will need to be watched closely during the implementation phase.
The bill also extends and increases funding of the existing AOT grant program. It creates a study that reports back to Congress on the activities of the P&As. It also sets up an independent grievance procedure. This is an important step forward. The bill also extends the Garret Lee Smith Act suicide prevention programs.
It moves to loosen the IMD exclusion which will create additional short term options in private facilities. This is an important step!. It creates a grant program for ACT (Assertive Community Programs). These programs should be available in all communities. Unfortunately this is rarely the case.
The bill also creates a number of studies, databases and data collection initiatives across all aspects of the mental health delivery system which should in time inform future decisions by policymakers (and advocates). It acknowledges the need to fund evidenced based and scientifically sound programs. This legislation also focuses on extending early intervention, brain research (CURES), training and support for law enforcement (CIT grants, Mental Health Courts, and a national training center) and workforce issues within the mental health delivery system.
This reform legislation was years in the making.
Its time is now. It will take many years to implement There is much momentum. The success of this comprehensive reform effort will depend on a mix of financing, ongoing work by champions on Capitol Hill and work by advocates on the Hill, in the media and back home in their communities. The hard work is to make these changes make a difference in all states in all communities in the lives of persons with serious mental illness and their loved ones.
*correction
After posting my blog, I received word from Dr. Paul Summergrad, a former president of the American Psychiatric Association, who took issue with my statement that NAMI was the only major mental health group to back Murphy’s bill. “The American Psychiatric Board of Trustees voted to support Murphy’s legislation when I was president at the end of 2014 and continued that support when he reintroduced his legislation as HR 2646 in 2015 while I was still president,” he noted.
I regret the error. Other groups also backed the bill. I specifically remember NAMI because Mike and I spoke at Murphy’s first House subcommittee session about his bill.
Mike and I speak at Murphy’s first hearing to House members
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