D. J. Jaffe: Why Murphy’s Legislation Needs To Be Passed Now

On Tuesday (11-10-15), I posted a blog by mental health advocate Leah Harris who opposes Rep. Tim Murphy’s Helping Families in Mental Health Crisis Act , which is making its way through the legislative process. Today, D. J. Jaffe, a strong supporter of the bill, writes about last week’s subcommittee markup session and why he believes Murphy’s bill should be approved without amendments.

Helping Families in Mental Health Crisis Act passes first hurdle

By DJ Jaffe, Executive Director, Mental Illness Policy Org.

The Helping Families in Mental Health Crisis Act (HR2646) was passed by the Health Subcommittee last week. (Unamended version here) But sitting in the room watching, was like attending two separate plays going on simultaneously. One play, about substantive ways to help the most seriously mentally ill was put on by Republicans. Democrats put on the other play. It demonstrated how little they know about serious mental illness and how far they had been misled by the mental health industry. It pains me to say that because I am a Democrat.

The Substance of the Bill

Historically, mental health bills in Congress have thrown money at politically correct, feel-good programs that let mental health industry engage in easy and palatable tasks like “reducing stigma,” “education” or “improving mental health,” but rarely deliver actual treatment to adults with serious mental illness. HR2646 has provisions to improve mental health, but it also has five provisions that start to focus government programs on delivering treatment to adults with serious mental illness. And that makes it important and different. If families of the most seriously ill continue to speak-out, this could be the beginning of a shift towards helping seriously ill adults after decades of shunning them. The support for the shift is coming primarily from Republicans who want to reduce crime, incarceration and tragedies. Democrats tend to avoid those issues for fear of causing stigma. They have been taught to ignore unpleasant truths like not everyone recovers, sometimes hospitals are needed, some seriously ill need the help of families, and yes, left untreated, those with serious mental illness are more violent than others. Following is a preliminary analysis of how the five most important provisions came out of the markup, followed by a discussion of what went on at the hearing.

Makes it more likely government will work to help the seriously ill, and rely on evidence.

Perhaps the most important provision of HR2646 is the dismantling of the Substance Abuse and Mental Health Administration (SAMHSA) and replacing it with an Assistant Secretary of Mental Health and Substance Abuse. SAMHSA is a disaster. It works at the federal, state, local and nonprofit level on moving mental health funds away from helping the seriously ill and toward non-evidence based, politically correct and often harmful programs designed to improve the mental health of all others. None of SAMHSA’s strategic initiatives are focused on helping those with serious mental illness or on reducing arrest, violence, incarceration, homelessness, hospitalization and suicide among the seriously ill. HR2646 requires the secretary to have expertise in serious mental illness, rely on evidence before expanding a program and to make serious mental illness more of a priority. Replacing SAMHSA with an Assistant Secretary of Mental Health and Substance Abuse will give mental illness a higher profile and allow better interagency coordination.

Makes it less likely that seriously mentally ill will be subjected to abuse and neglect. And stops federally funded lawyers from preventing states from improving their treatment systems.

The second most important provisions are those refocusing the Protection and Advocacy for Individuals with Mental Illness (PAIMI) program on preventing abuse and neglect of persons with mental illness. PAIMI was founded by Congress primarily to provide lawyers to protect the institutionalized seriously mentally ill individuals from abuse and neglect. This was eventually expanded to the uninstitutionalized and other activities were allowed. PAIMI does some good work for some individual consumers, but that is trumped by it’s system wide lobbying efforts designed to free the seriously ill from treatment. It is PAIMI’s unrelenting opposition to Assisted Outpatient Treatment and the presence of state hospitals that is causing more mentally ill to be incarcerated. The original version of HR2646 refocused the program on protecting community and institutionalized patients from abuse and neglect. However the new bill, with amendments not yet incorporated, might allow PAIMI to engage in other activities such as advocating for benefits and educational opportunities. For the first time, there will be a grievance procedure so those who believe PAIMI is acting inappropriately can have some recourse. We’ll see how that develops.
Reining in PAIMI and SAMHSA will help remove federally funded opposition to improving services for the most seriously ill.

Makes it easier for seriously ill who need hospitals to get access

An obscure provision of Medicaid law prevents states from getting reimbursed by Medicaid for adults with serious mental illness who need psychiatric hospital care. HR2646, as amended and passed in subcommittee, allows Medicaid to reimburse states for 20 days per month of hospital care in a psychiatric hospital. However, prior to the bill moving to the full committee, that number will be reduced to 15 days, based on data from the Center for Medicare and Medicaid Services (CMS). If funded, it could start to end the practice of incarcerating, rather than hospitalizing many seriously ill. “If funded” is a big if.

Medicare prevents beneficiaries from getting more than 190 days of inpatient care. In a previous version, HR2646 eliminated the prohibition. Unfortunately, the bill that was passed does not eliminate the provision, so Medicare can still discriminate against the seriously ill. This should offend all those who believe in ‘parity.’ I assume this was done for budgetary reasons.

Makes it easier and safer for families to help loved ones with serious mental illness

Some seriously ill need help from families. But existing HIPAA and FERPA law prevents healthcare workers and schools from telling parents what meds their children are on, what their diagnosis is, when next appointments are, which side-effects to watch out for, and other information they need to facilitate care. HR2646 as amended, allows families that provide care out of love, to get a small subset of the information paid providers already receive if the information is necessary “to protect the health, safety, or welfare of the individual or others.” The disclosure is narrowly limited to the diagnoses, treatment recommendations, appointment scheduling, medications, and medication-related instructions, but not personal psychotherapy notes. The information can only be disclosed if the absence of such information and proper treatment will lead to a worsening prognosis or an acute medical or mental health condition. The bill also makes explicit, what has always been left unsaid: nothing in HIPAA prevents doctors from receiving information from family members. These are all important.

Provides small seed funding for states that want to expand AOT Programs or offer treatment to the gravely disabled.

Assisted Outpatient Treatment allows judges to order a tiny subset of the most seriously ill into six months of mandated and monitored treatment while they continue to live uninstitutionalized in the community. AOT is the most successful program at reducing institutionalization and incarceration of those who already accumulated multiple incidents of arrest incarceration, hospitalization, or homelessness because of the inability or unwillingness to voluntarily comply with treatment that was made available to them. The bill as passed provides $20 million for three years (2018, 2019, 2020) to go to states with existing or new AOT programs. It also provides a 2% bump in mental health block grants (under $10 million divided by all states) to states with an AOT law. The bill also allows states to increase their mental health block grant by 2% if they have a civil inpatient or outpatient law that allows the gravely disabled to receive services under it. Mr. Murphy amended the bill, in response to Democrat concerns, so it does not require to states to have grave disability standards or offer assisted outpatient treatment, but gives them a bump if they do.

Conclusions on HR2646: By minimizing the ability of SAMHSA and PAIMI to impede treatment of the seriously ill, it makes future reform easier. The provisions addressing AOT, grave disability standards and state hospitals, if funded, will get treatment to many who would otherwise become incarcerated. The HIPAA provisions will make it easier for families to keep loved ones healthy. And the requirement for programs to be evidence-based will lead to useless programs being replaced with useful ones.

At the hearing.

The markup room was packed for a dramatic hearing that went on for ten hours. The entire first row behind Congressional staff was lined by families of the seriously ill who asked Rep. Murphy (R., PA) if they could attend to support his efforts. What united the families was compassion and love for seriously mentally ill adults who need care, not any particular party affiliation. The meeting started with a powerful speech by Rep. Tim Murphy about the need to help the seriously ill. Rep. Susan Brooks (R., IN) also made a powerful speech demonstrating her understanding of the revolving door of non-treatment the mental health industry has created for the most seriously ill.

The Democrats led off by complaining they weren’t consulted about the bill, but later admitted numerous meetings took place. Their real beef seems to be that the provisions above were not stricken from the bill. The Dems then went into political theater. They introduced a last-minute 250-page mental health bill they had never shown to Republicans. Rep. Murphy stated he would look at it to see what could be folded into his bill, but explained that since no one was given time to read the bill he would not recommend voting for it at this particular meeting so it failed to pass. The Dems then presented about 40 amendments to HR2646 that were also never previously shared with Republicans. Many were designed to strike the provisions above that help the most seriously ill. Other amendments were designed to create new programs for multiple needy populations, but not for adults with serious mental illness. Most failed, but an amendment from Cardenas (D. CA) passed that would allow states to ‘suspend’ rather than ‘terminate’ Medicaid benefits to kids who get incarcerated, which makes it easier to restart the benefits when incarceration ends. One from Butterfield (D., NC) passed concerning training a minority workforce. And an amendment from Rep. Matsui (D., CA) that would provide education about what HIPAA does and doesn’t allow was also passed.

During the 10-hour hearing it became apparent that Democrats had been successfully misled by SAMHSA and others who advocate exclusively for the highest-functioning. Party members didn’t seem to understand the difference between high functioning people and those with serious mental illnesses like schizophrenia and bipolar disorder who are not high functioning. Nor did they understand the difference between someone who is psychotic and believes the FBI planted a transmitter in her head, and someone who is sad or anxious because they are going through a tough time in their life. Serious mental illness is simply not a subject they are conversant with. Like SAMHSA-centric groups, the Democrats on the subcommittee rarely used the phrase “mental illness,” preferring “mental health” or “behavioral health” or mental health “issues”of mental health “conditions.”  It’s as if “mental illness” was a pejorative, not to be uttered in good company. Rep. Gene Green (D., TX) and Rep. Frank Pallone (D., NJ) came off as particularly uninformed about the nature of serious mental illness and what helps those with it. They made numerous false claims that most likely came from SAMHSA and the consumer groups they fund.

The Dems proposed funding “prevention.” But serious mental illnesses like schizophrenia and bipolar can not be prevented because we don’t know what causes  them. They used the claim of “civil rights” to oppose reform, but failed to understand how the status-quo keeps the seriously ill locked in jail or psychosis both of which prevent meaningful exercise of free-will. They supported funding “early intervention,” but 50% of the illnesses in children are primarily mild anxiety and ADHD, may remit on their own, and don’t become the serious mental illnesses like schizophrenia and bipolar disorder in adults. They supported funding peer support, but peer support is not proven to work better than professional support or to reduce arrest, incarceration, homelessness or suicide. They tried to kill the AOT provisions by parroting false claims that AOT drives people from care, in spite of research that 80% of those in it say it helps them ‘get well and stay well.’ They claimed AOT is ‘stigmatizing’ in spite of the fact research shows those in it perceive less stigma than those who are not. They claimed AOT doesn’t work by ignoring 20 AOT studies done in the last 15 years showing efficacy of AOT in multiple jurisdictions. They claimed AOT is a “last stage” intervention, ignoring the fact that for many of our loved ones, AOT is the last off-ramp before jails, shelters prisons and morgues. Joe Kennedy wanted to replace AOT provisions with ACT provisions demonstrating that he doesn’t understand both are needed. Dems claimed to be for “parity” but defended the IMD Exclusion which discriminates against the seriously ill. They claimed relaxing the HIPAA Handcuffs would drive people from care, in spite of research showing that when families are involved, patients do better. They correctly claimed the mentally ill are not more violent than others, without acknowledging that there is a subset of the most seriously ill who when they go without treatment, are more violent than others. They defended SAMHSA in spite of specific evidence that SAMHSA encourages states to spend block grants on people without mental illness, certifies programs that don’t work as working, funds antipsychiatry, wastes money and ignores serious mental illness. They defended PAIMI by blaming doctors, not PAIMI, for the failure to treat patients, demonstrating oblivion to the fact that when you have a federally funded PAIMI lawyer sitting across the table saying she’ll sue if the doctor treats the patient, the doctors tend to give in. Rep. Capps proposed starting a “trauma” program claiming, “Trauma can be treated.” But trauma is not a mental illness. PTSD is and even that can run from mild to severe.

I don’t blame Democrats for not understanding what serious mental illness is and what helps those with it. I blame SAMHSA for misinforming them, and supporting groups that do the same.

The bill passed 18-12, mainly on a party line vote. But Representative Kurt Schrader (D., OR) deserves special recognition, for breaking with his party’s orthodoxy and voting for the bill. Rep. Murphy will review the last-minute bill and amendments proposed by Democrats to determine if any of their provisions should be incorporated in HR 2646 before it is presented to the full Energy and Commerce Committee. If it makes it out of that committee it goes to the full house. Then, if the Mental Health Reform Act of 2015 (S-1945) passes the Senate, the two bills will be reconciled, voted on by their respective houses, and hopefully signed by the President. It’s a long way to go, but at last, Congress is considering how to help adults who are known to be seriously ill, rather than just throw more money at improving mental health.

People who want to keep up on these issues should follow Mental Illness Policy Org on Facebook or Twitter or visit our legislative page.