Morning Zen Guest Blog Post ~ Debbie Plotnick, Mental Health America
Dear Fellow Advocates:
It’s time to step back and take some credit. Acknowledge that your efforts have made a significant difference, even though no one has gotten everything they’ve wanted. But your efforts have had very positive results. Then gather your strength to not only beat back more of what you don’t want, and what you find hurtful, but also to fight for more of what you know is true and right, and for what you do want.
Look closely at where things are presently, not only where you wish they were, and just how far they have yet to go. Stop and really assess, don’t get stuck on where things were. Look at pending legislation in terms of existing law and regulation, and then think about what has the potential for good, as well as for bad. But most importantly, and hardest of all, is look beyond personalities and propaganda. Follow your own good counsel to present. Be in the here and now as you fight for what you passionately believe should come to pass (no pun intended).
What follows is detailed and nuanced. I respectfully ask you to please read it and then critically weigh what you think, and consider how you’d like to proceed. Maybe something will change, maybe everything will change, and maybe nothing will change. But it is my sincere hope that by reading this you’ll have a better understanding of where things are now, how they got there, and the important role advocacy has played, and can still accomplish.
On June 15, 2016 HR 2646, entitled Helping Families in Mental Health Crisis Act was voted 53-0 out of the House Energy and Commerce Committee. This unanimous vote showed a degree of bipartisanship that a year ago seemed almost unimaginable. This means that the bill in its current form may now come directly to the full House of Representatives for a vote. House leadership has indicated that they will move the bill after the July 4th holiday—this means in the coming weeks, before the August recess.
For much of its history, this bill was commonly referred to as the Murphy/Johnson bill, or just the Murphy bill. It began by loudly making the number one correlation that the public draws –no matter how often evidence is presented that this association is the exception and not the rule—gun violence and mental illness. Many of the original provisions seemed intended to increase old school reliance on hospital beds and involuntary commitment. However, much of the legislation that is now being sent on to the House strongly reflects the language and provisions of the Democratic alternative bill (HR 44435), which (owing to its primary sponsor) is known as the Green bill. The Green bill was the successor to what in the last Congress was known as the Barber bill. These bill have been widely supported by much of the advocacy community.
Because this is a political process, what is in currently in HR 2646 is the result of resolute advocacy but from opposing viewpoints. On one side were strong critics of the underfunded and disjointed current state of mental health , who were joined by caring but desperate families whose loved one’s were being failed but who had little knowledge about recovery and community supports. And on the other side were advocates fighting diligently to remove passages construed to be potentially very harmful to civil rights protections and decades of struggle to put recovery and peer supports into practice.
Although not 100% what the advocacy community might want, given that the bill’s initiators and original proponents have and continue to voice strong opposing views, advocacy has succeeded in removing many of the threatening provisions and greatly diminishing the impact of what remains. Some other issues that concerned the advocacy community are “done deals.” But not to be overlooked, also due to determined advocacy, the House bill and its Senate companion both contain quite a few beneficial provisions, which sets the stage for further positive change.
Here is a brief review of what advocates need to know regarding the provisions that have troubled them the most, how they’ve changed, where things now stand, and where they have the potential to go.
AOT, which refers to a specialized form of involuntary commitment called assisted outpatient treatment, presented one of the most concerning provisions for those in the advocacy community as it was originally put forth. But over time, and due to advocacy efforts and legislation that came from other arenas, much has changed.
In the first iteration of the Murphy bill (HR 3717) States that did not have, or did not adopt, an AOT law would forfeit 2% of their Federal Mental Health Block Grant. In the second version that became the Murphy-Johnson bill (HR 2646) this was changed to a 2% increase in Federal Mental Health Block Grant dollars to states with an AOT law on its books. Neither of these scenarios is currently under consideration.
As HR 2646 exists today, the AOT provisions build upon what is already in current law. It seeks to extend the length of time and funding for an AOT pilot program which already exists. Like it or not, this is a pilot that has been put into law, it will be evaluated, its outcomes reported, and it is slated to end. This program was approved in the Protecting Access to Medicare Act of 2014, (also known as the “Medicare Doc Fix”). Funding for this was appropriated in 2015 for the years 2015-2018. What is being proposed currently in HR 2646 (as passed out of committee) is that the funding would be extended through 2022 and would increase slightly from its current level.
PAMI: When changes to the Protection and Advocacy (for people with) Mental Illness first appeared in HR 3717 the effects if signed into law would have been devastating to the program and a blow to civil rights protections. Funding was to be slashed by 85%, leaving few resources. From the beginning there were also strongly worded provisions prohibiting state (and national) PAMI organizations from using federal funds for purposes of lobbying.
In the next iteration of the House bill, PAMI funding was no longer threatened, but most concerning to advocates were restrictions that would prevent PAMI advocates and lawyers from protecting people with mental illnesses in their right to refuse a prescribed medical directive. This would have meant that PAMI’s couldn’t defend people’s rights to refuse treatments they didn’t want, or from unfortunate but common exploitation by bad actors, such as those that bill Medicaid for unnecessary medical procedures. Provisions prohibiting state (and national) PAMI organizations from using federal funds to for purposes of lobbying were again reiterated.
In what has passed out of committee the restrictions prohibiting PAMI’s from defending people from exploitation are gone. What is presently in the proposed legislation are some changes and additions to existing reporting requirements, and a directive to establish new grievance procedures. It also strongly states that PAMI’s are to be “exclusively focused on safeguarding the rights of individuals with mental illness to be free from abuse and neglect.” The lobbying prohibition is also clearly stated. There is a clause in the present version that would prohibit PAMI’s from counseling “a person that lacks insight, from refusing medical treatment or going against the wishes of their caregivers.”
Here’s what advocates need to know as they consider the PAMI provisions, which were rewritten with input from PAMI advocates. The prohibition against using Federal funds for lobbying, and the directive to safeguarding the rights of individuals with mental illness to be free from abuse and neglect are in existing PAMI authorizing legislation. And while the counseling provision is new, what PAMI’s presently do, and can continue to do, is defend and protect, not counsel.
IMD Exclusion: Just the term makes advocates shutter—Institutions of Mental Disease (IMD). This fifty- year-old prohibition was put into place for reasons that are two-fold. One was to prohibit the Federal Government from paying the costs for what was considered to be the states’ responsibility—State Hospitals. And secondly, the IMD was intended to facilitate the closure of what had become state-run warehouses where millions of Americans languished sometimes for decades. Over time, among the unintended consequences of closing the these dying behemoths, is that in some locales there is nowhere to get care at all, as the number of community hospitals that were intended to afford acute care dwindled, and envisioned community-based services never fully came to fruition. Also substance use treatment facilities (which were not yet widely in existence) came to subject to this law.
There were concerns that provisions in earlier versions of the bill would allow the IMD to be repealed, and that there would be a return to institutionalization. What the current bill language seeks to do is to codify (put into law) what has already recently been finalized in regulation. Presently under a CMS final rule set out earlier this year, Medicaid dollars may be used for up to 15 days per month when a state Medicaid plan utilizes managed care for people to receive care in hospitals that meet the definition of an IMD (a mental health facility with more than 16 beds).
HIPAA: Advocates were greatly concerned that information would be shared against the wishes of the person receiving treatment. The bill as passed out of committee asks for clarification on under what circumstance this may be permissible and states that whatever is clarified must mesh with regulations that were issued by the Department of 6 Health and Human Services on February 20, 2014. It states that anything related to HIPAA will be done in conjunction with the Federal Office of Civil Rights within the Department of Human Services (HHS).
It is the discussion in a section entitled “Sense of Congress” there is language that will not make any legislative changes, but may be disconcerting to advocates. It is the use of the term “anosognosia.” This usage singles out people with mental illnesses who purportedly do not have awareness about their condition. However, such a phenomenon is common across many health areas. Use of this term in this context may be rhetorically offensive. But rhetoric is exactly what it is.
SAMHSA: This is an area about which there are differing interpretations. In early version of the bill the intent was to put an assistant secretary over the SAMHSA administrator. Presently the bill calls for an Assistant Secretary in place of an administrator and gives this person more power to coordinate across federal agencies. There will also be a Deputy Assistant Secretary who will assume a more administrative role. Bill language states that “a preference be given,” but not a requirement that the Secretary (but not the deputy) be an MD or PhD. This section as passed out of committee (uses language put forth in alternative bills, and has been signed off on by SAMHSA). Language in this bill should be more agreeable to advocates than what is presently in the Senate bill, which goes back to earlier versions of the House bill.
What’s in the bill for advocates and the people they care about—potentially a lot, including a $10 million grant for peer workforce development and training. There are also provisions that will further screening and early intervention. There are resources for Assertive Community Treatment (ACT), which often includes peers and is intended to support people in their home settings. It has provisions that can further parity, such as a Government Accountability Office (GAO) study. It reauthorizes or reinforces the use of important programs, including those that focus on trauma, integration of health services, suicide prevention, children’s health insurance and the uses of mental health screening and treatment for children in Medicaid.
So fellow advocates, please think carefully about what it is that you are and are not willing to live with to get more of what you want, especially since much has come to pass already. Remember, there will be changes and amendments, and most likely a need for House and Senate versions to be reconciled—more opportunities for advocacy. No matter what the reason, there is more interest in making a substantive change in national mental health policy, changes that will result in documenting what works (stuff we like) what may, or may not, be working (treatment as usual), and it is likely that legislation will be enacted. Please continue to fight to it legislation reflects your views and that builds upon what you know will make a positive difference. So speak up now—time is short.
Debbie F. Plotnick, MSS, MLSP
Mental Health and Systems Advocacy
Mental Health America
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