Murphy Stands Up for Mental Health During AHCA Markup

Congressman Tim Murphy (PA-18)

March 9 at 9:49am · 

ICYMI: Last night, my amendment confirmed there will be no changes to mental health & addiction parity under the American Health Care Act. Watch:

Murphy's Amendment Clarifies Mental Health Parity Protection under AHCA

During the Energy & Commerce Committee's markup of the American Health Care Act,…

YOUTUBE.COM

she helped him and other mentally ill kids

She foresaw disaster when her young son threw a computer at his teacher. How she helped him and other mentally ill kids.

This is a stunning story about a mother who realized when her son was very young — he threw a computer at his teacher in second grade — that he was mentally ill. And unlike most other people with mental illness, he was violent. As years passed and diagnoses changed, Tammy Nyden of Iowa knew she had to do something to prevent him from spiraling into disaster — and at the same time help other young people suffering from mental illness.
Millions of young people suffer from some sort of mental illness. It is believed that about 1 in 5 of the more than 50 million students in America’s public schools are suffering with one mental condition or another. That’s a problem for parents and educators alike, especially given that most don’t get treated and most school districts don’t have the resources to provide adequate mental health services for students.
Nyden’s story was written by Sarah Maraniss Vander Schaaff, who a year ago penned an extraordinary piece for The Washington Post about her own struggle with obsessive-compulsive disorder and generalized anxiety disorder and more recently a post for this blog about how obsessive-compulsive disorder affected the life of one young man and his struggles to get through school.



By Sarah Maraniss Vander Schaaff


On the first day of second grade, Tammy Nyden’s son threw a computer at his teacher.

Nyden had long observed behavior in her son that she viewed as peculiar. As a young child, he lined his cars up perfectly. If someone stepped in front of him while he was watching a movie, he’d scream and insist they start the film from the beginning. But until that day, her son had never been violent.
It was a turning point, said Nyden, a professor of philosophy at Grinnell College in Iowa, one that began her long examination of her state’s mental health services for children. Who was accountable? Who was looking at the big picture?
Her own son was growing more complicated with each diagnosis. He started second grade with one for Attention Deficit Hyperactivity Disorder, and soon Tourette syndrome and obsessive-compulsive behavior were added to the list. His OCD focused on scary or violent worries, with a fear that he would harm others. At age 10, he was diagnosed with autism. He talked about taking his own life. And when he was very mad, he said he wanted to blow up the school.
Nyden knew that most people with mental illness were not violent. The difficulty, she said, was that her son was.
Then, in December 2012, a college student in her department died by suicide. Four days later, Adam Lanza killed 28 children and adults at Sandy Hook Elementary School in Connecticut.
“The whole Newtown thing was terrifying,” she said, referring to her own son’s behavior and threats, “because we didn’t know what was really going on.”
She first turned to National Alliance on Mental Health (NAMI) affiliates in her state of Iowa for help. She was told they had no programs for children.
As for the school, she said the people on the ground were “superheroes.” But there were systemic problems. The head of special education for the district called her son’s threats of suicide “attention-seeking” behavior in a meeting for his Individual Education Program, a specialized plan for students in special ed.
Nyden understood the pressure put upon underfunded schools to take up all the problems society did not deal with. At the same time, “What are families supposed to do?” she said. “These kids need our help and they need an education.”
By February, her son’s behavior was manic. His speech made little sense. Then came the risky behavior.
It happened on the playground, after the school staff had found a beehive and warned students to stay away. He walked right into the swarm.
“They won’t sting me,” he told the staff members. “They are my friends.”
At the recommendation of a psychologist, her son was admitted to a hospital and later to a residential psychiatric hospital for children and adolescents. He spent nine months there, the maximum allowed by Medicare, before he was discharged and came home with all the same problems he had from the start, Nyden said.
But one thing did improve. For the first time, people stopped blaming her. Until then she had been told she was too strict, or not strict enough; that the behavior was a response to her divorce; and once, a physician said she seemed overly invested in her son having bipolar disorder, a condition he would not diagnose in a juvenile.
“No,” she told the doctor, “I’m invested in my child getting better.”
Soon, Nyden became keenly interested in children’s mental health reform in her state of Iowa, training to become an advocate and taking her elevator pitch to the statehouse. If she had once wondered who was organizing on behalf of kids, she now had her answer.
With others, Nyden created Parents Creating Change in Iowa, and NAMI Iowa Children’s Mental Health Committee. They formed the NAMI Iowa Casserole Club, an online support group for parents and caregivers of children and adolescents with mental health needs. If people give casseroles to those coping with a physical illness, the same compassion and support was needed for those with mental illness, the group said.


From there, Nyden picked up momentum. Renee Speh, another parent advocate, joined in, and the NAMI committee gathered 90 individuals and 40 organizations to draft a strategic plan, or a call to action, for a children’s mental health redesign.
They had persuasive facts: Youth suicide in Iowa was more prevalent than in the nation as a whole; approximately 50 percent of children with mental illness drop out of school; and 70 percent of youth in the state and local juvenile justice system had mental illness.
Speh said their strategic plan asked big questions about what Iowa was missing and what children needed. They sent their plan to the governor, legislature and director of the Department of Human Services.
They were heard. The state formed a Children’s Mental Health and Well-being Work Group and invited Nyden and Speh to join.
Jerry Foxhoven, executive director of Clinical Programs at Drake Law School, sits on the work group with Nyden.
“Tammy has played a tremendous role,” he said, “probably one of the most powerful roles at the table because she brings that perspective of family, that frustrated parent who sees all the struggles.” People have been receptive because she doesn’t just complain, he said, “She has great solutions and thinks outside the box.”
One of the biggest tasks for the work group, Speh said, has been to address the fragmented nature of services for children across the state.
“So we want to tie it together,” she said. And the group is looking at issues that are not traditionally associated with mental health, but relate to children’s well-being just as powerfully.
When a parent is unemployed, engaged in criminal activity or using drugs, Foxhoven said, “We’d be kidding ourselves if we think that doesn’t affect kids.”
The work group has been able to get modest funds to form crisis services for children and families. They are also creating learning labs in communities around the state, which help assess and improve the resources available in those regions.
President Obama recently signed H.R. 34, the 21st Century Cures Act. In his statement about the act, improving mental health came fourth on the list of issues the act will address.
NAMI summarizes the key provisions, including one listed for children and adolescents that supports grants for integrated care and telehealth programs.
On the state level, Foxhoven is hopeful that a redesign of children’s mental health is gaining traction in Iowa. “It’s kind of like a train,” he said. “Let’s start that train, get it from a dead weight stop, so it has some momentum of its own.”

Taking a philosophical view, Nyden said she believes 100 years from now people will look back and say, “I can’t believe how people treated mental health and how neglected it was.”
“As a parent it’s way too slow,” she said. “As an advocate, we’re moving in the right direction.”
As for Nyden’s son, she said that the “therapeutic classroom” she fought for has made a tremendous difference in his ability to function, thrive and even enjoy school. It has created a shift in treating his behavior — from reward and punishment to understanding the neurological cause and needs behind it. Instead of putting him in behavior classrooms and using restraint and isolation when he has rapid cycling or needs to express a tic, he can go to the therapeutic classroom, where he feels safe and a teacher trained in special ed and mental health can help him. He also made a good friend in that classroom who has similar challenges.
She knows that the issues facing her son will never disappear, but, as he has gotten older, the neurological development that comes with maturity has helped. He can calm down more quickly, and the medication and therapy are helping
He recently told his mom about a problem he had in school. He couldn’t decide which teacher he liked best because he liked both of them. “Right now, he has a lot of positive thoughts about school,” she said.

Valerie Strauss covers education and runs The Answer Sheet blog.


Follow @valeriestrauss
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21ST CENTURY CURES BILL
(Senate - December 08, 2016)

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[Pages S6913-S6914]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        21ST CENTURY CURES BILL

  Ms. CANTWELL. Mr. President, I wish to address the 21st Century Cures 
Act legislation, which the Senate passed yesterday with my support. I 
voted for this bill and support many of its provisions. However, I also 
have some serious concerns regarding the manner in which the bill is 
funded.
  I would like to congratulate two of my Senate colleagues for their 
remarkable commitment to this bill: the senior Senator from Tennessee, 
Lamar Alexander, and the senior Senator from Washington, Patty Murray, 
who worked long hours in good faith to forge a bipartisan compromise on 
both sides of the Capitol.
  Washington State is a laboratory for health care innovation. From 
Spokane to Seattle, my State has a culture of collaboration and 
inventiveness in which the entire health care community--including 
researchers, providers, insurers, employers, policymakers, and others--
come together to find better ways of preventing, managing, and treating 
disease. This collaboration makes my State unique and on the cutting 
edge of developing innovative health care delivery.
  That is why Washington is the original home of the Basic Health Plan, 
a State-run option that gives working people without employer-sponsored 
health care the negotiating leverage to get a better deal on health 
insurance.
  It is why the Boeing Company has partnered directly with health care 
providers like the Everett Clinic to reduce sick days and improve the 
health of its workers.
  It is why community leaders in Yakima and Spokane have banded 
together to break ground on new medical schools to fill unmet primary 
care needs in their regions.
  And it is why so many lifesaving medical discoveries and treatments, 
including immuno-oncology, dialysis, and the mapping of the brain have 
their roots in our State. Many of these discoveries started with NIH-
supported basic research at public research universities like the 
University of Washington and Washington State University.
  The 21st Century Cures legislation gives a big boost to Washington's 
health care innovators.
  First, the bill's investment in President Obama's Precision Medicine 
Initiative will help get the right treatment into the hands of 
patients, building on the longtime work of renowned

[[Page S6914]]

researchers like Dr. Leroy Hood and the Institute for Systems Biology. 
Tools like big data and sophisticated blood analysis can predict 
effective therapies based on a patient's unique biology, reducing 
ineffective prescriptions, and lowering health costs over time.
  Second, the bill's funding commitment to Vice President Biden's 
Cancer Moonshot will advance groundbreaking research at organizations 
like the Fred Hutchinson Cancer Research Center. By directing the 
body's own immune system to attack cancer cells, new cancer treatments 
can save lives for patients who may not respond to traditional 
interventions.
  Third, the bill's support for President Obama's Brain Research 
through Advancing Innovative Neurotechnologies, BRAIN, Initiative will 
continue the leadership of organizations like the Allen Institute for 
Brain Science in unlocking the mysteries of the brain. Neuroscience is 
one of the final frontiers of medicine, and future revelations in this 
field hold immense promise to better treat conditions affecting the 
brain, such as Alzheimer's and traumatic brain injury.
  In addition to my strong support for research into future medical 
miracles, many of my constituents need treatment for acute and chronic 
conditions now.
  That is why I am encouraged that the 21st Century Cures legislation 
takes positive steps to combat the dual crises of mental health care 
and opioid addiction.
  The legislation includes a $1 billion funding commitment to combat 
the opioid and heroin epidemic. In recent years Washington has 
experienced a doubling in heroin-related deaths, according to data from 
the Washington State Department of Health. Earlier this year, PBS's 
``Frontline'' profiled the courageous stories of some of my 
constituents who are battling addiction, as well as new public 
responses that municipalities like the city of Seattle are deploying to 
address this public health crisis.
  The reality in too many Washington communities is that needed 
addiction services are simply out of reach for those in the throes of 
acute withdrawal, relapse, or in need of ongoing recovery supports. The 
Cures legislation helps by authorizing much-needed State grants for 
treatment services, prescription drug monitoring, prevention, and 
health professional training programs, which will bolster efforts by 
public health departments like the Spokane Regional Health District to 
meet urgent community needs. This funding is far from sufficient, given 
that 90 percent of people who need addiction treatment in the United 
States do not receive it, according to the Substance Abuse and Mental 
Health Services Administration, SAMHSA. However, given that Senate 
Democrats have been calling for real money for the opioid epidemic 
throughout this Congress, the funding in Cures is indeed welcome.
  The 21st Century Cures legislation also contains positive new 
policies that aim to improve access to mental health care, including 
efforts to better integrate mental health and physical health as well 
as strengthen rules to ensure health insurance companies cover mental 
and physical health equally. Unfortunately, many of these policies are 
not funded and require future appropriations.
  Washington communities continue to confront a severe mental health 
treatment shortage at all levels of the care continuum, including 
community clinics and psychiatric units. A 2015 report by Mental Health 
America, a national advocacy group, ranked Washington State 48th in the 
Nation when it comes to mental health treatment, due to a high 
prevalence of mental illness and poor access to care. In the face of 
overwhelming emergency room admissions and a State legal ruling on 
psychiatric ``boarding,'' community partnerships like the Alliance for 
South Sound Health in Pierce County have stepped up to build more 
treatment capacity. And Governor Jay Inslee and the State of Washington 
have announced ambitious goals to integrate mental health with chemical 
dependency and physical health.
  I will continue to fight for real money for mental health, including 
policies to ease the Medicaid Institutions for Mental Diseases, IMD, 
exclusion, an archaic barrier to needed inpatient care for people in 
crisis, as well as policies to improve mental health delivery.
  I am also pleased that the 21st Century Cures legislation includes a 
provision I sponsored, S. 2261, the Rural ACO Provider Equity Act, to 
drive coordinated health care in medically underserved areas, as well 
as legislation I have cosponsored to preserve access to vital 
outpatient therapeutic services at small rural hospitals. Medical 
facilities in these remote communities--such as Forks, Brewster, and 
Newport--need our support to keep essential health services accessible 
in the face of doctor and clinical staff shortages. I thank the senior 
Senator from South Dakota for his partnership and support on these 
important issues.
  While I supported the Cures legislation, the package incorporates 
troubling budget offsets that are concerning.
  First, the Cures legislation finances itself in part by selling 
millions of barrels of oil from the Strategic Petroleum Reserve.
  The use of this budget offset steadily weakens the energy security of 
the United States and again uses the reserve as a piggy bank to pay for 
nonenergy priorities. In its November 29, 2016, Statement of 
Administration Policy on the Cures legislation, the White House Office 
of Management and Budget concurred, noting this offset ``. . . 
continues a bad precedent of selling off longer term energy security 
assets to satisfy near term budget scoring needs.''
  Second, the Cures legislation pays for its investments in part by 
cutting disease prevention funding. While I appreciate current 
legislative realities, this policy approach is not sustainable 
especially in light of dwindling public health resources throughout my 
State.
  Third, the final version of the Cures legislation omits a widely 
supported and bipartisan child welfare reform bill, the Family First 
Preventive Services Act, which I have been proud to cosponsor with my 
colleague Senator Ron Wyden. Washington State is currently using a 
Federal waiver, which I helped secure, to do a better job of keeping 
families together and reducing unnecessary foster care placements. This 
approach is better for kids and families, and it can save States money. 
The Senate's failure, up to this point, to pass this bill is a lost 
opportunity for children in Washington and throughout the Nation.
  Last, I note that the funding authorized by the Cures legislation 
must be appropriated by future Congresses. I will continue to work with 
my colleagues on the Appropriations Committee to fund these important 
health care priorities.
  I view the funding and policies in the Cures legislation as a step 
forward that continues to support Washington's health care innovation 
and pave the way for future medical breakthroughs. The mental health 
and opioid response provisions in the legislation are welcome in 
addressing these crises, but are far from sufficient. Moving forward, I 
will work to ensure that appropriators make good on the funding 
commitments in Cures, and I will fight to open up greater access to 
health care for Washingtonians.

Bipolar Disorder Progress

Understanding the Genetic ‘Architecture’ of Bipolar Disorder

3 Bullets

• Bipolar disorder (BD) is a common, severe and recurrent psychiatric disorder with no known cure and substantial morbidity and mortality. Heritable causes contribute up to 80 percent of lifetime risk for BD.
• Scientists hope that identifying the specific genes involved in risk for bipolar disorder will lead to new ways to treat the disease.
• ISB researchers identified contributions of rare variants to BD by sequencing the genomes of 200 individuals from 41 families with BD.

In research published on Feb. 17, 2015 in PNAS, ISB researchers and their colleagues describe a breakthrough in understanding the genetic “architecture” of bipolar disorder and in identifying some of the risk genes. This is the first major whole-genome study of bipolar disorder. Prior to this work, only a handful of replicable risk factors for bipolar disorder were known, primarily common variants with tiny effects.

It is estimated that up to 80 percent of lifetime risk for bipolar disorder is due to genetic causes. However, finding these risk genes has turned out to be incredibly difficult – even more difficult than in a number of other common diseases. The difficulty in finding genetic causes for bipolar disorder is most likely due to the large number of genes involved. There may be hundreds of genes involved, few of which are known. In addition, common genetic variation appears to contribute less to risk for bipolar disorder than in some other diseases.

There are two key findings in the study. First, the team identified several genes and pathways that have a significant burden of rare variants in bipolar disorder. These results provide new insights into specific biological mechanisms of bipolar disorder risk. Most notably, there is a significant burden in bipolar disorder families for several classes of neuronal ion channels. The movement of electrically charged ions in and out of neurons in the brain produces electrical currents, which are the primary way that neurons communicate with one another and process information about the world. The ion channels that were identified in this study are specifically involved in regulating the coupling of electrical activity between pairs of neurons at interaction zones called synapses. We found that there are many different rare variants in these genes, and most people with bipolar disorder seem to inherit more than one variant that could influence ion channel functions. While these findings are preliminary, the results are exciting because they shed light on a problem with which scientists have been struggling for a long time.

Second, the team found that many of the rare risk variants for bipolar disorder are located in regulatory regions. The sequences of protein-coding genes make up only about 1 percent of the human genome. Another 1-2 percent of the genome encodes instructions for gene regulation: when and where in the body a protein-coding gene will be turned on. Genetics studies of rare variants have usually focused on mutations in protein-coding regions because they are easier to understand. But as scientists get better at interpreting the instructions in the regulatory regions, it is becoming clearer that many of the disease-causing mutations are located in these regions. This study suggests that this is the case for bipolar disorder, given that 88 percent of the risk variants identified in the study were located in regulatory DNA rather than in the protein-coding genes.

Neuropsychiatric disorders such as schizophrenia, bipolar disorder, and major depression are the leading cause of disability in the United States. For bipolar disorder alone, up to 15 percent of cases result in suicide. Such a statistic underscores the need for better ways to treat and prevent mental illness, especially since existing treatments fail to work for many patients. Scientists hope that identifying the specific genes involved in risk for bipolar disorder will lead to new ways to treat the disease.

Title: Rare variants in neuronal excitability genes influence risk for bipolar disorder
Authors: Seth A. Ament, Szabolcs Szelinger, Gustavo Glusman, Justin Ashworth, Liping Hou, Nirmala Akula, Tatyana Shekhtman, Judith A. Badner, Mary E. Brunkow, Denise E. Mauldin, Anna-Barbara Stittrich, Katherine Rouleau, Sevilla D. Detera-Wadleigh, John I. Nurnberger Jr., Howard J. Edenberg, Elliot S. Gershon, Nicholas Schork, The Bipolar Genome Study, Nathan D. Price, Richard Gelinas, Leroy Hood, David Craig, Francis J. McMahon, John R. Kelsoe, and Jared C. Roach
Journal: PNAS
Link: pnas.org/content/early/2015/02/09/1424958112.abstract

Disorder

MURPHY WEIGHS IN ON DR. PHIL'S INTERVIEW

MURPHY WEIGHS IN ON DR. PHIL'S INTERVIEW WITH SHELLEY DUVALL For Immediate Release: November 23, 2016 Contact: Carly Atchison 202.225.2301 Washington, D.C. - In a recorded interview that aired last Friday on the Dr.Phil Show, actress Shelley Duvall discussed her mental illness and need for help. Best known for her role in “The Shining” (1980), the actress now displays manifest symptoms of serious mental illness.  Congressman Murphy weighed in:  “I’ve had the opportunity to examine the footage of the Shelley Duvall interview on Dr. Phil and I’m astounded that this was broadcast under the banner of entertainment. It reflects a woman in need of psychiatric medical care who lacked the basic executive functioning to understand the implications of her ‘consent.’ This should not have been pursued nor aired. Clearly she was not capable of consenting to this television experience due to her diminished cognitive capacity. Ms. Duvall has a basic right to privacy and the way in which she was exploited for afternoon entertainment is appalling.  “Our society continues to exploit Americans experiencing mental illness. Even worse, we set them up for public mockery and ridicule. We will only break down the stigma of mental illness by ending the lurid exploitation of the mentally ill and focus on educating the public about brain illness as a medical condition and how patients, when treated at the right time in the appropriate care setting, can and do recover. Unfortunately, our laws, systems and society allow the most vulnerable to end up cycling in and out of emergency rooms, homeless, in jail or in a morgue.  “One of the greatest challenges we face in overhauling our broken system is helping those in psychiatric crisis access medical care. All too often patients, because of their psychosis, refuse to participate in life-saving treatment. This interview highlights the challenge of treating those who don’t understand the critical nature of their illness and often refuse help, but yet are also those very patients who need treatment the most.  “My Helping Families in Mental Health Crisis Act tackles this challenge head-on by investing and expanding intensive community-based approaches like Assisted Outpatient Treatment for individuals with serious mental illnesses.  “Ms. Duvall’s refusal to participate in treatment reflects the desperate need to advance models of care designed for treatment-resistant patients. These evidence-based, clinically successful programs allow healthcare teams to engage psychiatric patients where they are most comfortable and most likely to follow through with treatment, enabling them to succeed in their recovery. Rather than wait for patients in the midst of a psychiatric crisis to fill up emergency rooms, and often sent out of the hospital without receiving treatment, we need to provide options for getting the treatment to those who need it most.  “It's time that we right the wrongs in our nation’s treatment of the mentally ill and enact the Helping Families in Mental Health Crisis Act.”  Congressman Murphy, a practicing psychologist with over 40 years of experience in the field, has authored the most comprehensive crisis mental health reform bill in a half-century, the Helping Families in Mental Health Crisis Act (H.R. 2646). Learn more about his bill here. ### Murphy Press | Congressman Tim Murphy (PA-18) 2332 Rayburn House Office Building | Washington, DC  20515 (202) 225-2301 | (202) 225-1844 (f) Press List Sign Up  Click here and sign up for Rep. Murphy’s Weekly E-News |

Mental Health Reform Act of 2016 (S. 2680): Stalled in the Senate

Coalition for Mental Health Reform

Concerns with the Helping Families in Mental Health Crisis Act of 2015 – passed
in the House of Representatives – July 6, 2016


The Coalition for Mental Health Reform is made up of disability, civil, and human rights
organizations working with people with psychiatric disabilities for the improvement of
legislative outcomes for mental health reform.

On July 6, 2016 the US House of Representatives voted on The Helping Families in
Mental Health Crisis Act of 2015 by a 422 -2 vote. As a coalition we worked to make
sure that many harmful provisions in the original draft of this bill were removed and/or
edited. We are grateful for the House Energy and Commerce Committee members work
on this language.

Although this legislation passed with a large majority of the House Representatives in
support, we continue to have some concerns with the bill’s language as passed. We
hope that ultimately the Senate version of mental health reform legislation titled Mental
Health Reform Act of 2016 (S. 2680) which was voted out of the HELP Committee on
March 16, 2016, will go to the floor for a full vote soon.

Our concerns with H.R. 2646 are as follows:

As per the July 1, 2016 version:

http://docs.house.gov/billsthisweek/20160704/HR2646.pdf

1. Sec. 101 Assistant Secretary for Mental Health and Substance Use
The Substance Abuse and Mental Health Services Administration (SAMHSA) has
played a critical role over the past few decades to raise the bar for what should be
expected for people with the most serious mental health conditions and from state and
local systems and providers. HR 2646 creates the new position of Assistant Secretary
for Mental Health and Substance Use to oversee SAMHSA, which preferences
individuals with a MD or a PhD in psychology. The insertion of medical authority over
SAMHSA would be a huge step backward to institutional policies and models. Further,
the position adds an additional layer of bureaucracy that is unnecessary. We do not
support the creation of this new position.

2. Sec. 107 Grievance Procedure for (Protection and Advocacy for Individuals
with Mental Illness (PAIMI))

There is an already existing grievance procedure within the PAIMI Act, and no evidence
has been provided that this already existing system is not working. Thus, we believe
that there is no need for the creation of a new grievance procedure based at the
Department of Health and Human Services here in Washington, DC.

However, if such a new procedure is to be created, we are concerned that this new
procedure could issue decisions that would be contrary to a particular state or territory’s
ethics or bar rules or current attorney grievance procedure because of a lack of
knowledge of the intricacies of all 56 state and territory’s rules. Such a situation would
put an advocate in the position of either having to follow a decision of the agency that
oversees the funding of the PAIMI program, or violate his or her state or territory’s code
of ethics, bar rules, or grievance procedures. Advocates should not be put into this
catch 22. Thus, the language would need to be clear that a decision under this
independent procedure cannot contradict the state or territory’s code of ethics, bar
rules, or grievance procedures.

Additionally, the language should make it clear that a decision made through this new
procedure has to be based on an interpretation of the Act itself and whether the actions
taken by the advocate are contrary to the requirements of the PAIMI Act, not the wishes
or desires of the individual overseeing the grievance procedure here in Washington,
DC.

3. Sec. 111 Advisory Councils; Section 110 B. Authorities of Centers for Mental
Health Services and Substance Abuse Treatment; and Sec. 501B National Mental
Health and Substance Use Policy Laboratory

The multiple advisory councils and the members of the Policy Laboratory created by this
legislation will be under the authority of the Administrator of Substance Abuse and
Mental Health Services Administration (SAMHSA) with stringent and discriminatory
protocols that leave out the voice of people with psychiatric disabilities. We believe that
at least 1/3 of public members of the advisory council and policy laboratory should be
people with psychiatric disabilities and that the bill should establish a process for
appointments and service. We believe that this will not necessarily require an increase
in the number of overall members of these bodies or reduction in representation from
other groups, as people with psychiatric disabilities may also be members of the other
groups that must be represented on these bodies. For example, people with psychiatric
disabilities may also be family members of others with psychiatric disabilities, mental
health professionals, and representatives of leading advocacy organizations.

4. Sec. 206. Providing EPSDT services to children in IMDs
The current language would provide federal Medicaid funding for evaluation, prevention,
screening, diagnosis, and treatment services provided to individuals under age 21 who
have been placed in institutions for mental diseases (IMDs). Although the federal
government already provides funding for inpatient psychiatric services delivered to
youth and young adults living in IMDs, payment for other health care services for
individuals in IMDs has traditionally been the responsibility of the States.

It is well established that lengthy placement in IMDs is harmful to children and young
adults. By requiring states to shoulder the costs of health care services for individuals in
IMDs, current Medicaid laws help to incentivize states to develop community-based
care programs and avoid overreliance on long-term institutionalization. Section 206
would remove this incentive. Moreover, because Section 206 lacks any time limitation, it
would continue to provide federal subsidies even for placements in IMDs that have
continued for months or years.

5. Sec. 207. Electronic visit verification system required for personal care
services and home health care services under Medicaid

Section 207 of H.R. 2646 has nothing to do with mental health or substance abuse
services. This section was added by the House Energy and Commerce Committee last
month for the first time in the committee markup of the bill which sought no input from
the Disability Community that would be subject to - and harmed by - this provision.
Electronic Visit Verification (EVV) services are based on outdated and erroneous
assumptions. First, they assume that disabled people and seniors who use attendant
services are homebound because most systems use a home phone to verify that an
attendant has arrived or finished a shift. Today, attendant service users receive
services and supports throughout the community and use cell phones which can be
shared. EVVs also purport that electronic systems are more effective than other forms
of visit documentation, however these systems have been demonstrated to be less
secure and less effective in prosecuting fraud than non-electronic systems which
provide transparency, require multiple sign-offs and have verified signatures. Finally,
these systems rely on predetermined schedules which are not used in consumer
directed attendant programs.

Additionally, the systems will impact the independence and privacy rights of people with
disabilities by imposing a defacto homebound requirement on Medicaid attendant
service users, preventing the disabled individual from monitoring submitted hours, and
in some cases providing geo-tracking data to the government on the movements of
disabled people. Finally, states that require EVV may be found to be joint employers of
attendants and liable for overtime payments. This requirement is simply a handout to
companies providing EVV services for personal care and home health services under
Medicaid and cannot pass into law. We oppose the EVV requirement because it is
harmful to individuals with disabilities, ineffective at addressing fraud and has the
potential to increase state liability.
(To read more go to:
http://www.advocacymonitor.com/ncil-position-opposing-electronic-visit-verification/ )

6. Sec. 401. Sense of Congress on Health Insurance and Portability and
Accountability Act (HIPAA)

Valerie MarshIn this section the use and defining of people with serious mental illness as having a
condition called Anosognosia which is defined as “a person not having the ability to be
aware of their illness” and indicating that this would make them unable to make “sound
decisions” regarding their care, is offensive to many. According to the literature,
anosognosia is a condition whereby stroke and paralysis related victims deny the
presence of those conditions, due to physiological damage to the parietal lobe of the
brain. While there is no scientific evidence to tie this form of brain damage to mental
illnesses, some have misapplied this term in order to justify coercive treatment and
reduced privacy rights. We do not support this language.

7. Section 503. Increased and extended funding for assisted outpatient grant
program for individuals with serious mental illness

Assisted Outpatient Treatment (AOT laws) and laws that require a civil court to order
involuntary inpatient or outpatient treatment for an individual if the court finds that an
individual, as a result of mental illness, is a danger to self or others “is persistently or
acutely disabled, or is gravely disabled and in need of treatment” are discriminatory.
This type of treatment will bring law enforcement directly to the front door of many with
psychiatric disabilities. This would have an adverse effect on the work being done to
provide community based, peer-to-peer treatment. It also has the potential to increase
the punishment and unfortunately violent encounters between police and people with
mental illness.

State of the art outreach, engagement and follow up services that are delivered on an
immediate, intensive and sustained basis provide powerful strategies to respond to the
urgent needs of people and families in crisis. Recognizing that a number of these
successful approaches employ voluntary approaches and that there remains no
conclusive evidence that AOT is more effective than these approaches, we urge
Congress to authorize pilots that evaluate the effectiveness of both voluntary and court
mandated approaches.

We believe that the appropriated funds for the AOT programs should be used for testing
or piloting research programs on voluntary alternatives.

8. Sec. 717. Peer Professional Workforce Development Grant Program
This section would provide the Secretary of Health and Human Services the ability “to
award grants to develop and sustain behavioral health paraprofessional training and
education programs, including through tuition support”. It also authorizes “the
appropriations of $10,000,000 for the period of fiscal years 2018 through 2022” to fund
this program.

While we appreciate the intent to increase awareness about peer run and other
rehabilitative approaches, the crisis we face in community mental healthcare requires
that we re-direct these funds to expand direct access to critically needed peer support
services. We recommend that $10 million should be afforded to states and localities to
expand the broad array of peer run approaches across the nation.

It would be more successful for the lives of persons with psychiatric disabilities to
provide more community based care and peer-to-peer services. This would provide
better opportunities for these individuals to remain in the community in accordance to
Olmstead v L.C. This mental health legislation should be one that strengthens and
improves many of the current programs working to change lives as well as protect the
civil and human rights of persons with psychiatric disabilities.

Conclusion

In closing, we understand that H.R. 2646 passed out of the House but multiple concerns
remain for advocates and people with psychiatric disabilities. We hope that these
concerns will be addressed prior to Congress passing any legislation that will be sent to
the President’s desk for his signature. The civil and human rights of persons with
psychiatric disabilities must be a part of the implementation of these mental health
reforms and H.R. 2646 does not provide this in its current format.

We look forward to the opportunity to work with Congress to address these concerns
and to assist with the passage of a mental health reform law. Please contact Dara
Baldwin, Senior Public Policy Analyst, National Disability Rights Network at
dara.baldwin@ndrn.org or 202-408-9514 ext. 102 with any questions or concerns.

Coalition for Mental Health Reform members
Autistic Self Advocacy Network (ASAN)
Bazelon Center for Mental Health Law
The National Association of County Behavioral Health and Developmental Disability
Directors (NACBHDD)
The National Association for Rural Mental Health (NARMH)
National Coalition for Mental Health Recovery (NCMHR)
National Council on Independent Living (NCIL)
National Disability Rights Network (NDRN)
National LGBTQ Task Force Action Fund
New York Association of Psychiatric Rehabilitation Services (NYAPRS)
Resources:
Letters of Support for Mental Health Reform Act of 2016 (S. 2680):
http://www.ndrn.org/en/public-policy/mental-health/protect-paimi.html

The Helping Families in Mental Health Crisis Act (HR2646)

Federal - HR 2646

The Helping Families in Mental Health Crisis Act (HR2646)

Introduced

June 4, 2015

Description

UPDATE: PASSED HOUSE, 422-2

Authors: Representatives Tim Murphy (R-PA) and Eddie Bernice Johnson (D-TX)

What it does: This is the strongest mental health reform bill to help people with serious mental illness and their families, and ensure people with SMI have access to the treatment and care they need. HR 2646:

Creates an Assistant Secretary of Mental Health and Substance Use Disorders to coordinate efforts and elevate the importance of mental health and severe mental illness in the federal government;

Awards funding to states and local jurisdictions to implement lifesaving, evidence-based treatment programs, called “assisted outpatient treatment” (AOT) laws for people who are too sick to maintain treatment themselves;

Reforms the discriminatory IMD exclusion barriers to increase the availability of psychiatric inpatient beds;

Clarifies HIPAA to ensure mental health professionals are legally permitted to share critical diagnostic criteria and treatment information with parents or caregivers of patients with serious mental illness;

Focuses the Protection and Advocacy System to better address cases of abuse and neglect -- including advocacy for community services;

Better enforces the Mental Health Parity Law;

Improves integration across federal agencies of programs and funding streams that serve people with SMI;

Improves integration of mental and physical health care in Medicaid;

Supports the RAISE program for early intervention in the treatment of psychosis; and

Bolsters suicide prevention programs.

What’s the status? 

The bill passed with enormous bipartisan support in a vote of 422 yays to 2 nays, following a unanimous vote out of the Energy and Commerce Committee.

What's next? 

We are running out of time this legislative session, and we must focus advocacy efforts on strengthening the currently weak Senate mental health reform bill, S2680 (formerly S1945, which has substantively changed in markup) and ultimately passing a Senate version of the bill. 

Our Position

Support

Commentary

http://cqrcengage.com/treatmentadvocacycenter/app/bill/583823

The good:

The strongly bipartisan bill has passed the House with a landmark 422-2 vote, with support from House Leadership, including Speaker Paul Ryan, and a wide and diverse coalition of mental health advocates. It made it through the process largely intact, maintaining all major provisions to help people with SMI. The bill has been sent with all of this support behind it to the Senate for consideration, where they are working on their own version of mental health reform. 

The bad: 

We are running out of time in this short legislative calendar and in an election year to get mental health reform to the finish line. 

The ugly: 

Most of the important provisions in HR2646 to help people with SMI have yet to be added into the Senate bill, including creating an Assistant Secretary position for mental health and substance use, HIPAA clarification, IMD exclusion reform, and AOT funding. 

Original Sponsor 1

Rep. Tim Murphy (R-PA)

Co-Sponsors 20

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• Rep. Ralph Abraham (R-LA)
• Rep. Mark Amodei (R-NV)
• Rep. Brad Ashford (D-NE)
• Rep. Lou Barletta (R-PA)
• Rep. Andy Barr (R-KY)
• Rep. Karen Bass (D-CA)
• Rep. Dan Benishek (R-MI)
• Rep. Ami Bera (D-CA)
• Rep. Gus Bilirakis (R-FL)
• Rep. Mike Bishop (R-MI)
• Rep. Sanford Bishop (D-GA)
• Rep. Marsha Blackburn (R-TN)
• Rep. Diane Black (R-TN)
• Rep. Earl Blumenauer (D-OR)
• Rep. Suzanne Bonamici (D-OR)
• Rep. Mike Bost (R-IL)
• Rep. Charles Boustany (R-LA)
• Rep. Brendan Boyle (D-PA)
• Rep. Robert Brady (D-PA)
• Rep. Susan Brooks (R-IN)
• Rep. Corrine Brown (D-FL)
• Rep. Vern Buchanan (R-FL)
• Rep. Larry Bucshon (R-IN)
• Rep. Bradley Byrne (R-AL)
• Rep. Ken Calvert (R-CA)
• Rep. Earl Carter (R-GA)
• Rep. John Carter (R-TX)
• Rep. Matt Cartwright (D-PA)
• Rep. Steve Chabot (R-OH)
• Rep. Jason Chaffetz (R-UT)
• Rep. Judy Chu (D-CA)
• Rep. Mike Coffman (R-CO)
• Rep. Steve Cohen (D-TN)
• Rep. Tom Cole (R-OK)
• Rep. Chris Collins (R-NY)
• Rep. Barbara Comstock (R-VA)
• Rep. Gerald Connolly (D-VA)
• Rep. Paul Cook (R-CA)
• Rep. Jim Cooper (D-TN)
• Rep. Ryan Costello (R-PA)
• Rep. Kevin Cramer (R-ND)
• Rep. Rick Crawford (R-AR)
• Rep. Ander Crenshaw (R-FL)
• Rep. Henry Cuellar (D-TX)
• Rep. Carlos Curbelo (R-FL)
• Rep. Rodney Davis (R-IL)
• Rep. Peter DeFazio (D-OR)
• Rep. Jeff Denham (R-CA)
• Rep. Charlie Dent (R-PA)
• Rep. Mark DeSaulnier (D-CA)
• Rep. Ted Deutch (D-FL)
• Rep. Mario Diaz-Balart (R-FL)
• Rep. Robert Dold (R-IL)
• Rep. Dan Donovan (R-NY)
• Rep. Mike Doyle (D-PA)
• Rep. Sean Duffy (R-WI)
• Rep. John Duncan (R-TN)
• Rep. Renee Ellmers (R-NC)
• Rep. Tom Emmer (R-MN)
• Rep. Anna Eshoo (D-CA)
• Rep. Sam Farr (D-CA)
• Rep. Chaka Fattah (D-PA)
• Rep. Stephen Fincher (R-TN)
• Rep. Michael Fitzpatrick (R-PA)
• Rep. Chuck Fleischmann (R-TN)
• Rep. Jeff Fortenberry (R-NE)
• Rep. Trent Franks (R-AZ)
• Rep. Rodney Frelinghuysen (R-NJ)
• Rep. Chris Gibson (R-NY)
• Rep. Robert Goodlatte (R-VA)
• Rep. Kay Granger (R-TX)
• Rep. Garret Graves (R-LA)
• Rep. Sam Graves (R-MO)
• Rep. Alan Grayson (D-FL)
• Rep. Frank Guinta (R-NH)
• Rep. Brett Guthrie (R-KY)
• Rep. Janice Hahn (D-CA)
• Rep. Richard Hanna (R-NY)
• Rep. Cresent Hardy (R-NV)
• Rep. Gregg Harper (R-MS)
• Rep. Andy Harris (R-MD)
• Rep. Vicky Hartzler (R-MO)
• Rep. Alcee Hastings (D-FL)
• Rep. Denny Heck (D-WA)
• Rep. Jaime Herrera Beutler (R-WA)
• Rep. French Hill (R-AR)
• Rep. Ruben Hinojosa (D-TX)
• Rep. Richard Hudson (R-NC)
• Rep. Bill Huizenga (R-MI)
• Rep. Duncan Hunter (R-CA)
• Rep. Robert Hurt (R-VA)
• Rep. Steve Israel (D-NY)
• Rep. Hakeem Jeffries (D-NY)
• Rep. Lynn Jenkins (R-KS)
• Rep. Bill Johnson (R-OH)
• Rep. Eddie Bernice Johnson (D-TX)
• Rep. David Jolly (R-FL)
• Rep. David Joyce (R-OH)
• Rep. Marcy Kaptur (D-OH)
• Rep. John Katko (R-NY)
• Rep. Mike Kelly (R-PA)
• Rep. Peter King (R-NY)
• Rep. Adam Kinzinger (R-IL)
• Rep. John Kline (R-MN)
• Rep. Steve Knight (R-CA)
• Rep. Ann Kuster (D-NH)
• Rep. Darin LaHood (R-IL)
• Rep. Doug LaMalfa (R-CA)
• Rep. Leonard Lance (R-NJ)
• Rep. Brenda Lawrence (D-MI)
• Rep. Barbara Lee (D-CA)
• Rep. Ted Lieu (D-CA)
• Rep. Frank LoBiondo (R-NJ)
• Rep. Billy Long (R-MO)
• Rep. Alan Lowenthal (D-CA)
• Rep. Frank Lucas (R-OK)
• Rep. Blaine Luetkemeyer (R-MO)
• Rep. Cynthia Lummis (R-WY)
• Rep. Tom Marino (R-PA)
• Rep. Betty McCollum (D-MN)
• Rep. Jim McDermott (D-WA)
• Rep. Patrick McHenry (R-NC)
• Rep. David McKinley (R-WV)
• Rep. Martha McSally (R-AZ)
• Rep. Patrick Meehan (R-PA)
• Rep. Gregory Meeks (D-NY)
• Rep. Luke Messer (R-IN)
• Rep. John Mica (R-FL)
• Rep. Candice Miller (R-MI)
• Rep. John Moolenaar (R-MI)
• Rep. Markwayne Mullin (R-OK)
• Rep. Kristi Noem (R-SD)
• Rep. Rick Nolan (D-MN)
• Rep. Donald Norcross (D-NJ)
• Del. Eleanor Norton (D-DC)
• Rep. Devin Nunes (R-CA)
• Rep. Beto O'Rourke (D-TX)
• Rep. Pete Olson (R-TX)
• Rep. Steven Palazzo (R-MS)
• Rep. Erik Paulsen (R-MN)
• Rep. Scott Perry (R-PA)
• Rep. Collin Peterson (D-MN)
• Rep. Scott Peters (D-CA)
• Rep. Pedro Pierluisi (D-PR)
• Rep. Robert Pittenger (R-NC)
• Del. Stacey Plaskett (D-VI)
• Rep. Bruce Poliquin (R-ME)
• Rep. Mike Pompeo (R-KS)
• Rep. Tom Price (R-GA)
• Rep. Mike Quigley (D-IL)
• Rep. Charles Rangel (D-NY)
• Rep. Tom Reed (R-NY)
• Rep. Dave Reichert (R-WA)
• Rep. Reid Ribble (R-WI)
• Rep. Tom Rice (R-SC)
• Rep. Cedric Richmond (D-LA)
• Rep. Scott Rigell (R-VA)
• Rep. Martha Roby (R-AL)
• Rep. Phil Roe (R-TN)
• Rep. Tom Rooney (R-FL)
• Rep. Ileana Ros-Lehtinen (R-FL)
• Rep. Peter Roskam (R-IL)
• Rep. Dennis Ross (R-FL)
• Rep. Keith Rothfus (R-PA)
• Rep. David Rouzer (R-NC)
• Rep. Ed Royce (R-CA)
• Rep. Bobby Rush (D-IL)
• Rep. Matt Salmon (R-AZ)
• Rep. Steve Scalise (R-LA)
• Rep. David Schweikert (R-AZ)
• Rep. Austin Scott (R-GA)
• Rep. F. James Sensenbrenner (R-WI)
• Rep. Pete Sessions (R-TX)
• Rep. John Shimkus (R-IL)
• Rep. Bill Shuster (R-PA)
• Rep. Mike Simpson (R-ID)
• Rep. Kyrsten Sinema (D-AZ)
• Rep. Christopher Smith (R-NJ)
• Rep. Jackie Speier (D-CA)
• Rep. Elise Stefanik (R-NY)
• Rep. Chris Stewart (R-UT)
• Rep. Steve Stivers (R-OH)
• Rep. Eric Swalwell (D-CA)
• Rep. Bennie Thompson (D-MS)
• Rep. Glenn Thompson (R-PA)
• Rep. Mike Thompson (D-CA)
• Rep. Scott Tipton (R-CO)
• Rep. Dina Titus (D-NV)
• Rep. David Trott (R-MI)
• Rep. Michael Turner (R-OH)
• Rep. David Valadao (R-CA)
• Rep. Juan Vargas (D-CA)
• Rep. Nydia Velazquez (D-NY)
• Rep. Greg Walden (R-OR)
• Rep. Jackie Walorski (R-IN)
• Rep. Mimi Walters (R-CA)
• Rep. Tim Walz (D-MN)
• Rep. Daniel Webster (R-FL)
• Rep. Brad Wenstrup (R-OH)
• Rep. Edward Whitfield (R-KY)
• Rep. Roger Williams (R-TX)
• Rep. Joe Wilson (R-SC)
• Rep. David Young (R-IA)
• Rep. Don Young (R-AK)
• Rep. Todd Young (R-IN)
• Rep. Lee Zeldin (R-NY)
• Rep. Ryan Zinke (R-MT)

Latest Actions See More/Less

• July 14, 2016 — Referred to the Senate Health, Education, Labor and Pensions Committee. Congressional Record p. S5151
• July 7, 2016 — Katko, R-N.Y., House speech: Personal explanation for roll call vote no.355, and would have voted yea if present. Congressional Record p. E1064
• July 7, 2016 — Bost, R-Ill., House speech: Personal explanation for roll call vote no.355, and would have voted yea if present. Congressional Record p. E1056-E1057