Saturday, January 14, 2017

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
Comments





Monday, January 2, 2017

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

Text available as: 
Formatting necessary for an accurate reading of this text may be shown by tags (e.g., <DELETED> or <BOLD>) or may be missing from this TXT display. For complete and accurate display of this text, see the PDF.
        

[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