Exercising restraint in schools

1 Comment | Posted

In 2012, I wrote an article for the Sunday New York Times that exposed the use of physical restraints and seclusion rooms with kids in schools across the country.

I learned about these practices, which at the time seemed almost unimaginable to me and many other parents, when I discovered that our 5 year-old daughter had been locked almost daily, over a three-month period, in a seclusion room, which had previously been a teacher's phone booth, and was later used as a mop closet, in the basement stairwell at her school in Lexington, MA.

In the two years since my Times story, the controversy surrounding the use of physical restraints and seclusion rooms in schools has exploded and resonated across the country from Hawaii to Massachusetts, fueled by a powerful combination of concerned parents and enterprising journalists intent on exposing these practices when and where they occur. Meanwhile, many schools have publicly denied their existence, in some cases despite incontrovertible evidence, and parents can find themselves being intimidated or even publicly attacked for speaking out.

For two years, I've witnessed the evolution of this story as a journalist, and at the same time the issue has affected me as a parent whose child was subjected to these damaging practices. As increasing numbers of parents are becoming concerned about the use of restraints and seclusion rooms in schools attended by their kids, and as a national mobilization of concerned parents and others is underway seeking to pass national legislation to curtail these practices, it seemed like a good time to take a look at the issue from a parent's perspective.

Specifically, how widespread are the use of restraints and seclusion? Are they needed? What do parents face when they challenge their schools or speak out about their use? And how can parents and other concerned members of the public get involved with national efforts to insure that all kids are kept safe in school?

What exactly is restraint and seclusion in schools? Is it like a student getting a "time out?" 
According to the U.S. House Committee on Education and the Workforce, which is working to ban these practices:

  • "Seclusion means involuntarily isolating a student in an area by himself or herself [from which the student is physically prevented from leaving.] . . . This includes putting children in dark, small rooms as punishment." This is different than a "time out" in which a student is separated from others to allow him or her a chance to calm down.

DANGEROUS PRACTICES--The use of restraints and seclusion rooms, such as these in a Lexington, MA school, often lead to physical and emotional injury to students. 
Restraint according to the Committee means "restricting a student's freedom of movement [including immobilizing a student's torso, arms, legs or head]. Restraint can become fatal when it prevents a child's ability to breathe. In some of the cases examined in [a 2009 Government Accountability Office] report, ropes, duct tape, chairs with straps and bungee cords were used to restrain or isolate young children."

How widespread are these practices and what kids are involved? 
A 2009 Government Accountability Office (GAO) report found that 20 students had died while in seclusion rooms; countless others as young as three and four years old have been injured and traumatized. One young teen in Georgia hung himself in a seclusion room while staff sat outside the locked door; a seven year-old died face down in physical restraint; and a young teen was suffocated face down in restraint by his teacher twice his size.

According to the advocacy group TASH, recent reports indicate that the shoes of an 8 year-old with Down Syndrome were duct-taped so tightly that she could not walk and her ankles were bruised; a 10 year-old with autism was pinned face down after getting upset over a puzzle; and a child with Cerebral Palsy severed her finger when she was confined in seclusion. Parents often are not told by schools about restraint or seclusion, or they learn about it long after it has occurred.

Federal data released in March from the U.S. Department of Education Office for Civil Rights documents the extent of restraint and seclusion, finding more than 267,000 incidents reported nationwide in the 2012 school year alone. According to a recent statement from Rep. George Miller of the House Education and Workforce Committee, "while that number is alarming in itself, what's even more concerning is the fact that many of our largest school districts failed to report on their use of seclusion and restraint at all --indicating that the actual rate of use is likely much higher."

Also alarming, according to Miller, is that "despite the fact that special needs students comprise only 12 percent of the total student population, this data shows that nearly 60 percent of all incidents of seclusion or involuntary confinement involve students with physical, emotional, or intellectual disabilities, and that these students make up 75 percent of those subjected to restraints."

Additionally, their use is disproportionate by race: African-American students comprise only 19 percent of all students with disabilities, but they make up 36 percent of students with disabilities subjected to mechanical restraint.

The Department of Education Office for Civil Rights tracked the use of restraints and seclusion state by state and school district by school district and found: "in Nevada, Florida, and Wyoming, students with disabilities . . . represent less than 15% of students enrolled in the state, but more than 90% of the students who were physically restrained in the state. Nevada (96%), Florida (95%), and Wyoming (93%) reported the highest percentages of physically retrained students with disabilities. . ."

But aren't restraint and seclusion sometimes needed? How else can schools handle kids, especially those who can be difficult and get out of control? 
The short answer is, as experts will tell you, that physical restraints and seclusion rooms don't work as ways of helping students learn and practice self-control, and that according to research there are behavioral techniques of working with kids that do work, as well as teaching kids self-regulation, how to negotiate and how to communicate more effectively.

The U.S. Secretary of Education, Arne Duncan, wrote to schools nationally in 2012 saying, "there continues to be no evidence that using restraint or seclusion is effective in reducing the occurrence of the problem behaviors that frequently precipitate the use of such techniques." Furthermore, Duncan stressed that "any behavioral intervention must be consistent with the child's rights to be treated with dignity and to be free from abuse."

According to TASH, there are "evidence-based positive behavioral interventions and supports [that have been] shown to greatly diminish and even eliminate the need to use restraint and seclusion." As an example, Dr. Michael George, director of Lehigh University's Centennial School, an alternative school in Pennsylvania that targets students with aggressive behavioral issues, told the U.S. Senate Committee on Health, Education, Labor and Pensions that when he arrived at the school, "the use of physical restraint was commonplace." George said he closed the school's two seclusion rooms, and cut restraint and seclusion use from over 1,000 occurrences per year to less than ten through the use of positive intervention plans. "We have the technical knowledge necessary . . . to end the overreliance of seclusion and physical restraint," he said.

Joe Ryan seconds Dr. George. Dr. Ryan is a Professor of Special Education at Clemson University and a national expert on working with students with emotional and behavioral disorders. "It simply defies logic," said Ryan, "that with the current emphasis on implementing evidence-based practices in classrooms, many schools have elected to embrace seclusion and restraint while ignoring safer research based practices for managing aggressive behaviors."

The impact on parents who find their children have been subjected to restraints and seclusion can be devastating.

Robert Ernst was subjected to a seclusion room as a first grader in Lexington, MA. Robert, who's now 19, told his story recently in Washington, DC, at an event held for the introduction of federal legislation that would curb these practices.

"I was in first grade and I was taken by my special education teachers to a seclusion room for acting out in class," said Robert. "I was dragged down the hallway of the school by my wrists, and thrown into a windowless, padded concrete room by myself, complexly unsupervised for up to a half hour at a time . . . At the time this was extremely terrifying."

His mother, Wendy Ernst, recalls what it was like to try and advocate for Robert:

"It was a difficult time because the school didn't want to listen to any other perspectives about what they might be able to do," said Wendy. They were insistent that it was the only thing that would work. It made you feel frustrated that they couldn't come up with something else as this was obviously harming your child. It was like torture." 

SPEAKING OUT ON SECLUSION--Robert Ernst, subjected to seclusion practices as a first grader, talks about his experiences at the introduction of the "Keeping All Students Safe Act" earlier this year. 
When asked what advice she had for parents dealing with these issues, Wendy Ernst responded: "Tell them to stand up for your child. Believe your child. And insist on having reports in writing . . . They can't say they didn't do that. Because it's in writing." Wendy added that restraint and seclusion are "too often is the first response, when it should only be used as a last resort when someone is in imminent danger."

What about parents who speak up? What are the risks involved for parents who can find themselves being singled out for speaking about these issues publicly and trying to help their children?

All too often the response of school districts when confronted about the use of restraints and seclusion is to deny, minimize and blame.

In Hawaii, in early 2013, Hawaii News Now reported that the families of six disabled students had come forward with allegations of abuse by school staff. Cell phone images of one student being held down by the neck were released, and a lawsuit alleged that another student was forced to eat food she had thrown up. According to the news organization: "At the time of the allegations, the state said its own investigation had uncovered no evidence of abuse and that the women who made the initial claims were lying. Earlier this year, an administrative law judge ruled the students had been physically and emotionally abused by school staffers and suggested that the state had botched its investigation into the abuse."

As a result of the actions of the parents and news coverage, a state bill that prohibits the use of seclusion and physical restraint on students in public schools, and protects some of Hawaii's most vulnerable students, was signed into law by Governor Neil Abercrombie.

In Lexington, MA, a survey of parents of kids with special needs found that of 61 parents commenting on their communications with the school, 23 of them (37%) indicated that they felt intimidation and the fear of reduction of services, or not receiving the services their children need, as reasons for not feeling comfortable raising questions and concerns.

One Lexington parent stated in the report, "I am afraid of being considered a trouble maker and then my child's services will suffer." Another parent commented, "There is retaliation for raising concerns in the form of delayed meetings, limiting access to teachers, and even filing false child abuse reports."

Keeping All Students Safe Act 
To curtail the use of restraint and seclusion in schools across the country, Senator Tom Harkin and Rep. George Miller have introduced the federal Keeping All Students Safe Act.

"These harmful practices, referred to as seclusion and restraint, are commonly used as disciplinary measures, most frequently on students of color and those with disabilities," wrote Rep. George Miller regarding the bill, which would ban restraint and seclusion except in cases where the student or others are in imminent danger.

"There's a patchwork of largely lackluster state laws and regulations that leaves thousands of students vulnerable to abuse each school year," said Miller in a recent letter. "Despite federal laws limiting use of seclusion and restraint in hospitals, psychiatric facilities, community-based facilities, and even prisons, no such federal law exists to restrict this abuse in schools. Few states provide protections for all children by law, and many states have weak legal protections or no protections at all." 

CONGRESSIONAL ACTION--U.S. Senator Tom Harkin introduced the "Keeping All Students Safe Act" on February 12, 2014. 
Opposition to the legislation comes from the American Association of School Administrators which objects to the requirement that restraint can only be used to avoid serious bodily injury since, according to the AASA, it would be impossible for school staff to make a determination about whether the risk of injury in a crisis situation could lead to serious bodily injury. The AASA is also arguing that the data collection provisions of the act as well the demands on staff training will be both burdensome and costly for school districts.

But Sen. Tom Harkin rejects these reasons for allowing these practices to continue.

"These old myths, these old ways of treating people have got to go by the wayside," Harkin said at the Feb. 12 press conference introducing the Keeping All Students Safe Act. "You have to wonder how many young lives have been so severely damaged that they cannot be fully included members of our society."

Harkin compared the seclusion rooms he has seen in schools to a recent trip he took to Cuba.

"You know what that reminds me of, folks?" said Senator Harkin, gesturing to the photograph of a school isolation room. "You know where I was last Saturday? I was in Guantanamo, Cuba . . . We went and saw the cells where the keep the most dangerous terrorists in the world. And you know what their cells look like? Like that. And that's where they're putting our kids, in schools." 

*   *    *   *   *    *   *   *

billBill Lichtenstein is a founding member of #KeepStudentsSafe and a fierce advocate for the rights of youth and families. Nationally recognized for both journalism and media, his work has appeared in some of the nation's leading publications including the New York Times. His work has been honored with more than 60 major journalism awards, including a Peabody Award; a Guggenheim Fellowship; eight National Headliner Awards; a United Nations Media Award, and three National News Emmy Award nominations.

Originally published in the Autism File.

HR 3717 will lead to treatment before tragedy

1 Comment | Posted

Morning Zen Guest Blog Post ~ Dottie Pacharis ~ 

At age 27, my son's life and the lives of his family changed forever. He was transformed into a different person. His behavior became weird, psychotic and delusional. He was obsessed with neurotic religious beliefs: He thought that God had anointed him a prophet and commissioned him to write another book for the Bible.

He believed he was in the witness-protection program, and federal agents were trying to assassinate him because he was in possession of top-secret information that would take down important people in the government if he went public. He developed an unhealthy fixation for the president and made many attempts to get into the White House. He thought he had a top-secret White House security clearance, and that the FBI had issued him a special gun permit.

There were days he actually believed he was the president, living in the White House. He was in complete denial that anything was wrong with him. It took the assault of a police officer to get him committed to a hospital where he was diagnosed with bipolar disorder.

My son was so ill my family feared he would never recover. But recover he did after 32 days of treatment with forced medications. He suffered four additional, prolonged bipolar-manic episodes, each episode preceded by his decision to stop taking his medication. Each episode more severe than the previous and of a longer duration. The longer duration was because of judges at commitment hearings who ruled time and time again that my son was not a danger to himself or others — oftentimes against the recommendation of the treating psychiatrist.

These judges were complying with state laws that set strict controls regarding hospitalization with forced treatment, restricting it to circumstances when a person is suicidal or homicidal. These laws force families to watch their loved ones deteriorate mentally until they reach the crisis stage and meet the commitment criteria of being a danger to themselves or others. By that time, it is sometimes too late.

Each time my son was allowed to go untreated for long periods of time, he sustained further brain damage. His downward course was aided by an ineffective legal system that continually protected his civil right to refuse treatment until he became suicidal or homicidal. This illness left him trapped in a body ravaged by irreversible damage from untreated bipolar disorder. Sadly, he was allowed to reach the crisis stage one time too many. His third attempt at suicide was successful.

Following the Newtown, Conn., shootings, Rep. Tim Murphy (R-Pa.), a clinical psychologist by training, raised awareness of the need to fix our broken mental-health system and led the charge on Capitol Hill for reform. He spent a year reviewing federal mental-health policies and last December introduced the Helping Families in Mental Health Crisis Act, H.R. 3717.

This bill emerged from a series of hearings on mental-illness-treatment issues before the House Energy and Commerce Subcommittee on Oversight and Investigations, which Murphy chairs. These hearings, according to Murphy, "revealed that the approach by the federal government to mental health is a chaotic patchwork of antiquated programs and ineffective policies across numerous agencies."

Families for decades have had to work within the constraints of our broken, dysfunctional mental-health system that fails the sickest — those people who need treatment the most, but are too sick to recognize their illness, and refuse treatment. This bill addresses the obstacles families face when trying to save loved ones from untreated serious mental illness. It would expand access to treatment for individuals who miss out on mental-health services because they are too ill to seek them.

Serious psychiatric disorders, such as bipolar, schizophrenia and severe depression, require medical intervention. They are treatable. They do not have to result in suicide or mass shootings. Helping Families in Mental Health Crisis is the most comprehensive mental-health-reform legislation to be introduced in 51 years. It will lead to treatment before tragedy.

Had H.R. 3717 been law during my son's 13-year struggle with severe bipolar disorder, his family would have been able to help him get treatment. He might very well be alive today.

*   *    *   *   *    *   *   *

dottieDottie Pacharis is retired from a law firm in Washington, DC. She divides her time between Fort Myers Beach, Florida, and West River, Maryland. Since her son’s battle with bipolar disorder, she has become an advocate for appropriate care for the mentally ill, especially family involvement in decisions about treatment. Dottie is the author of Mind on the Run – A Bipolar Chronicle, the story of a suicide that proper treatment would have prevented. She has been a featured speaker at various mental health organizations and has been published in the Wall Street Journal, Washington Times, Guardian UK, News-Press, Ground Report, and the Orlando Sentinel.

This article was originally posted as an editorial in the Orlando Sentinel. 

Evidence-supported early psychosis intervention as a community standard of care for all adolescents and young adults

2 Comments | Posted

Morning Zen Guest blog post ~ Damien Sands & Tamara Sale ~ 

We know that Schizophrenia is one of the leading lifetime causes of disability(1), yet when young people develop psychosis in the United States, the average delay before receiving treatment is more than two years(2). Families face a series of obstacles when finding and accessing care, and the care available is rarely based on current research(3). Young people experience barriers to treatment, traumatizing and coercive entry into care at times, and services not based on current knowledge - if they were receiving care at all(4).  

Here in Oregon a small group of advocates, their families, and State and Local Government became strange bedfellows and formed what became the first statewide attempt to implement evidence-supported early psychosis intervention as a community standard of care for all adolescents and young adults. Oregon’s Early Assessment and Support Alliance (EASA) began as a regional initiative and spread through a series of intentional strategies to the state level.  EASA was born out of a Managed Mental Health Care Organization called Mid-Valley Behavioral Care Network (MVBCN), then under Oregon’s Medicaid program, whose goals explicitly identified prevention and early intervention as part of its mandate. MVBCN’s staff looked at the practices developed by the Early Psychosis Prevention and Intervention Center (EPPIC) at the University of Melbourne, Australia. For a decade the University of Melbourne had digested, researched and developed training and support materials associated with the treatment of early psychosis(5).

With staff whose experiences were shaped both personally and professionally by this condition, along with key leadership who saw the suffering experienced in their adult population, they championed a revolution in how traditional care was offered in the community. EASA’s goals are to enable young people to maintain normal developmental progress and control of their lives in their own communities, rather than the common experience of crises leading to isolation, poverty and disability. It was this local grassroots effort where we observed significant decreases in hospitalization, which caught the attention of State leadership. However, it was those youth describing horrific neglect and various tragedies and their transformation to success through EASA before State legislators that made the largest impact.  No longer was EASA trying to make this happen on its own, but now through legislative funding it had the opportunity to expand.

At this point this is where I received the opportunity to work at the State with my co-writer Tamara Sale, then at MVBCN and now the Director of the EASA Center for Excellence at Portland State’s Regional Research Institute.  This partnership became a critical relationship. Expanding EASA and rolling out a Young Adult System was not to be the traditional RFP where the State would be passive in its involvement, simply relying on widget counting, but instead would be actively involved in systems transformation. EASA was reshaping how care was offered and it was critical that barriers created by our own Administrative Rules and limited billable codes be removed to allow this transformation to occur. Equally, the State provided administrative authority, contract accountability and problem solving, in partnership with technical experts from MVBCN who supported and guided ongoing implementation at both state and local levels in an official capacity.  Simply put, not only did EASA shift the ways local providers operated, but it changed the role of State program officers, from passive contract monitors to active advocates for system development, and those who started as advocates were brought into a day-to-day role of helping to operationalize the evolving system. 

With this partnership, the new EASA programs established a programmatic infrastructure in less than a year. The six years that it had taken MVBCN had now been distilled, and its success could be attributed to increased clarity of the model, detailed practice guidelines, training, consultation, fidelity review, financial support and contractual accountability.  A retroactive analysis of the dissemination process identified the following elements as critical for others in early stages of adoption. 

  • Articulate a vision for system reform that extends beyond current constraints and communicates urgency;
  • Establish centralized facilitation and ongoing leadership committed to system change;
  • Engage leaders and other partners to bridge funding gaps and identify and pursue high leverage opportunities;
  • Using available resources, establish ongoing training, consultation, coaching, and workflow redesign;
  • Establish an ongoing process of receiving and reviewing feedback about implementation and outcomes; and
  • Engage with others involved in similar efforts nationally to share resources and leverage change across common systems barriers.

By 2013, 80% percent of the population in Oregon was covered under EASA. The Young Adult System had been built to a point where it was working in partnership with EASA, while lending support to advocacy organizations such as Youth Move Oregon. The next step was the Oregon Health Authority and Office of Vocational Rehabilitation Services funding the new EASA Center for Excellence at Portland State University Regional Research Institute(6). The Center for Excellence is now responsible for planning, training, fidelity reviews, credentialing, statewide program development and coalition development, ongoing sustainability efforts, integration of emerging research, and ongoing evaluation. From a small local MHO, EASA has now grown into an established center and is poised to oversee the implementation of remaining areas not served around the state, and to be a leader in technical support across the nation for those that seek it out.

There are several key lessons from Oregon’s experience for policy makers and partners at the local, state and national levels.  Perhaps the most important is that universally accessible early intervention at a large scale is feasible within the United States, but requires leadership and a systemic approach.  There is a danger in narrowing the approach to a Medicaid population, as this will most likely miss the majority of young people in their community who need the service.  The national RAISE study hopes to demonstrate that a set of well-researched interventions provided early in the illness can reduce disability and improve outcomes(7). Broad implementation requires community education and outreach. All the while, EASA remains true to its origins with a focus on youth voice, young adult engagement, family involvement and empowering the person to have success in their own care. By sharing our successes in these areas, all early psychosis programs in the U.S. can benefit from solutions others have found.

References

  1. Wu, E, Birnbaum, H, Shi, L, et al. (2005).  The economic burden of schizophrenia in the United States in 2002.  Journal of Clinical Psychiatry, 66, 1122-1129.
  2. Marshall M, Lewis S, Lockwood A.  Association between duration of untreated psychosis and outcome in cohorts of first-episode patients. Archives of General Psychiatry 2005; 62: 975-983.
  3. Drake R, Essock S.  The science-to-service gap in real-world schizophrenia treatment; the 95% problem. Schizophrenia Bulletin 2009; 35(4): 677-678. US Department of Health and Human Services.  
  4. Mental Health: A Report of the Surgeon General. Rockville, MD: US Dept of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health, 1999.
  5. McGorry PD, Hickie IB, et al. Clinical staging of psychiatric disorders: a heuristic framework for choosing earlier, safer and more effective interventions.  Australia and New Zealand Journal of Psychiatry 2006; 40(8): 616-622.
  6. Portland State University Regional Research Institute.  EASA Center for Excellence. Available online at http://www.rri.pdx.edu/Project/761.  Accessed 2/15/14. 
  7. Recovery After an Initial Schizophrenia Episode (RAISE): NIMH Research Project.  Available online: http://www.nimh.nih.gov/health/topics/schizophrenia/raise/index.shtml/  Accessed February 5, 2014. 

*   *    *   *   *    *   *   *

damianandtamaraDamien Sands, MPA is a Director with a regional county governmental agency and founding partner in Re-emergence Consulting, focused on innovative delivery strategies for Governmental and NGOs serving youth and young adults. Damien has over 20 years experience in serving and advocating for Young Adults in Transition, and has been involved in numerous startups from regional MHOs to groundbreaking innovative practices at the State and local level.

Tamara Sale, MA, is the Director of the EASA Center for Excellence at Portland State University in Oregon.  She has been responsible for development and implementation of Oregon's early psychosis effort since it began as a regional program in 2001.  Tamara has decades of experience as a mental health systems planner and as a family advocate. For more information go to www.easacommunity.org 

Weighing in on the controversial topic of Assisted Outpatient Treatment

0 Comments | Posted

Morning Zen Guest blog post ~ Lisa Lambert ~ 

When my son was 19 years old, he went off his psychiatric medications. He had just graduated high school from a residential program where taking prescribed medications and going to therapy was mandatory.  “I just want to see what I’m like without them,” he said. “I’ve been on meds and in therapy since grade school,” he reasoned, “so maybe I don’t need them anymore.”

Within 3 days, he spoke so rapidly you had to watch his lips to understand everything he said.  He slept 2 or 3 hours a night and had boundless energy.  He pronounced himself “hippy-happy.”  Within 5 days, he began to see things that no one else could and became agitated easily.  I held my breath.  In the past, “hippy-happy” had turned into instances when he thought there were conspiracies against him and other times when he threatened me or his younger brother.  This time, we were lucky.  He trusted my observations and those of other people he felt close to and resumed the medications after 12 days.  For him, medication turned the switch back to normal speed and shifted his reality back to where it meshed with other people.  But what if that hadn’t happened?

There is an emotional debate going on in mental health circles across the country right now about Assisted Outpatient Treatment (AOT) which compels people over 18 with mental illness and who are considered a safety risk, into treatment.  On one side are those who are worried about preventing shootings like those in Newtown and Aurora, who point out that compelling treatment is better than jail.  They believe there needs to be a process where someone with a serious mental illness can be ordered by a judge into treatment.  On the other side of the issue are those who worry that such a law can take away the self-determination and independence of people with mental  illness.  There is little common ground.

What do parents of young people think?  With some exceptions such as Liza Long, much of the debate about AOT has been waged by adult consumers, mental health professionals and legal groups.  If we want changes (or not) that work for us, parents of young people need to weigh in.

Young people are living at home in droves.  And not just young people with mental health or behavioral health issues. In 2012, 36% of the nation’s young adults ages 18 to 31 were living in their parents’ home, according to a Pew Research Center analysis, the highest percentage in at least four decades.  A great many have remained on their parents’ insurance as well.  Their day to day lives are intertwined with their parents, their siblings and often extended family as well.  This has become the new normal in America.

Parents of children and teens with mental health needs are used to being involved.  They work for years to become knowledgeable and effective champions for their children. They fight for services in IEPs, advocate with insurers, stay on top of treatment and push for access.  As a colleague puts it, one day our children go to bed age 17, wake up age 18 and are supposed to be in charge of their treatment and navigate an unfriendly maze of services.  Parents are suddenly to be both not seen and not heard.  This is dissimilar to families where a young person has a chronic health condition; for them, it is considered a good practice for parents to stay part of the team while slowly relinquishing management of their child’s illness.

Parents make decisions based on what is best for the entire family.  When my then-19-year-old son went off his medications, I worried about the impact on his 16 year old brother.  Many families of young adults with mental health needs have other children living at home too.  It’s your job as a parent to think of the needs and safety of each family member.  Much of the debate about Assisted Outpatient Treatment is focused on rights or needs of the individual while parents always balance what’s best for the family with what’s best for each son or daughter.

Many families I know have used the courts to access treatment for their minor child.  Massachusetts has recently reformed its status offense laws (Children Requiring Assistance) but parents are still urged to file a petition saying their child is out of control by schools, therapists and relatives.  While it is a last resort and can produce mixed results, families are often comforted by the simple fact that there is an option they can turn to.  A number of parents of young adults have wished for a similar option where they have the ability to petition for services when they are desperate.

If my family were a game show, it would be Let’s Make a Deal.  We talk, we negotiate, we talk some more.  When my son went off his meds (the first time; yes, there were other times), this worked for us.  I talked, he argued, I listened, he did too.  But every family is different.  Luck plays a part as well.  He had a long relationship with his psychiatrist and trusted her.  His relationship with his brother was good at that point and he listened to his input.  At another point in time,  none of this might have been true.

Forty-five states have laws that permit the use of AOT.  Massachusetts is not one of them.  I have always been firmly in favor of stopping anything that lessens someone’s rights, especially their right to choose for themselves. But if my older son’s rights are in conflict with my younger son’s safety, my advocacy hat comes off and my parent hat goes immediately on.  Parents of children with mental health needs have to make tough decisions that are right for their family every day.  It’s time for us to weigh in on this issue too.

*   *   *   *   *   *    *   *   *

lisaLisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children's Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.

This article by Lisa Lambert originally posted on the Parent Professional Advocacy League website.

 

Tim Murphy is raising the right issues but proposing the wrong solutions

0 Comments | Posted

Mental health advocates and experts agree that our mental health systems are the shame of the nation. As many psychiatric institutions — some of which were notorious for abuse and neglect — were shut down in the 1980s, jails and prisons became the new asylums and people struggling with mental health and substance-use issues were warehoused in even more inhumane and costly settings.

Our community mental health systems are fragmented, ineffective, difficult to access and fail to engage people who need the most help. Instead of providing needed social services for those who are homeless and experiencing serious mental health challenges or addictions, we criminalize their suffering.

Rep. Tim Murphy, R-Upper St. Clair, is to be lauded for shining a powerful spotlight on these issues. However, despite his good intentions and clear commitment, Rep. Murphy has it wrong when it comes to one of his most prominent prescriptions for fixing our broken mental health care systems.

The Murphy proposal — included in the Helping Families in Mental Health Crisis Act — pressures states to divert more than $130 million to expand the use of “involuntary outpatient commitment” court orders that serve only to force people into the same service approaches that have already failed to help them. It was drafted in response to the Newtown school shooting tragedy, in which a mentally ill Adam Lanza killed 22 people and himself, although people with mental illness are more likely to be victims than perpetrators of violence.

People with psychiatric disabilities who would be directly affected by Rep. Murphy’s bill are vehemently opposed to it. In every other area of medicine, it is recognized that patient-centered approaches that foster personal choice and dignity are far more successful in engaging people with the most serious conditions as active participants in their own health care.

Rep. Murphy argues that involuntary outpatient commitment — also known as assisted outpatient treatment — is a “less restrictive alternative” to the horrors of prison and mental institutions. But why make people choose the lesser of two evils? Why not focus instead on providing an upfront investment in voluntary housing and support services that are proven to work?

One such model is Housing First, an evidence-based supportive housing program that does not make people jump through hoops in order to get off the streets and find a safe place to live. Many individuals who have found decent places to live through Housing First go on to work toward recovery from their mental health issues and to become clean and sober.

One success story is Shaelynn, who was living on the streets, had a felony conviction and was using drugs and alcohol when she was accepted into the program. With the program’s support, she has achieved sobriety, has reconnected with her daughters and grandchildren, and is now doing very well.

Another evidence-based model is peer-to-peer support, which deploys trained individuals in recovery from serious mental health and or substance-use conditions to engage the hardest to reach people on the streets, help them access needed services and supports, and avert crises and tragic outcomes. For example, New York’s Peer Bridger program was able to reduce avoidable and expensive re-hospitalizations by 71 percent in 2009.

But instead of promoting these innovative and promising forms of engagement, Rep. Murphy’s bill seeks to cut federal funding that would make them more available.

Contrast this with Britain, which is working instead to reduce coercive interventions and promote patient-centered approaches. British psychiatrist Tom Burns, once a former supporter of community treatment orders — the British equivalent of assisted outpatient treatment — has changed his mind about the practice. He says that the research shows these laws don’t accomplish much.

Rather than pouring even more taxpayer dollars into promoting controversial coercive approaches, we should be expanding proven and promising practices.

We in America do not lack resources. What we lack is the political will to get this done. 

Published in the Pittsburgh Post-Gazette, September 10, 2014

*   *   *   *   *   *    *   *   *

Leah Harris is a mother, storyteller, survivor, advocate and the Director of the National Coalition for Mental Health Recovery. She has written widely to promote human rights, dignity, healing, and self-determination, and has spoken at advocacy/activist gatherings and conferences including NARPA, Alternatives, and the National Conference on Organized Resistance (NCOR). Her writing has appeared in publications including Off Our Backs: a Women’s Newsjournal, Adbusters.org, CounterPunch, Street Spirit and theicarusproject.net. Her spoken word album, “Take Refuge,” chronicles her journey from suicidal patient to human rights activist. 

Join the "Karaoke Challenge" for children's mental health!

1 Comment | Posted

If you have a Facebook account or have watched a morning news program in the last few weeks, you have undoubtedly seen the “Ice Bucket Challenge.”  Friends and family are dumping buckets of ice water over their heads in an effort to make a fool of themselves to raise awareness and money for ALS, commonly known as Lou Gehrig’s Disease.  You can get wet or donate $100 to the cause.  The challenge has gone viral; neighbors and celebrities alike have participated, and this worthy cause has seen an influx of donations and people are having discussions about this horribly invasive disease.

On August 11th when the news broke that our world had suffered the tragic loss of one of the most brilliant comedians of all time, my heart was heavy. People asked the question, how could a man who made people laugh deep belly laughs battle depression so intense that he would take his own life?  And news story after news story reported what the world already knew, Robin Williams had battled mental illness and addiction his entire life, and even he made no attempt to hide it or stigmatize it.  He spoke publically about his battles with addiction, rehab, and depression.  Even this man who’s life’s work and career had touched so many of our lives through his various roles was not immune to the horrors of mental illness.  And in the darkness of the situation, I felt a little spark of hope that maybe out of this tragedy would come some glimmer of hope.  Maybe through this horrible loss, the world would find the courage to break down the barriers and the stigma of mental illness and have a discussion about how mental illness is under-funded, under-treated, over-stigmatized, over-shadowed by other more “physical” conditions.  Maybe his life and untimely death would open up the door for an educated, informed, fearless discussion about mental health.  My heart was broken at the loss of this iconic genius, but I started thinking about the “Ice Bucket Challenge”.

I wished that there was something akin to the “Ice Bucket Challenge” that would bring awareness and funding to the topic of Mental Health in the way that ALS was gaining awareness.  My 10 year old son and I sat down and thought about how we could challenge our friends and family to something similar.  My 12-year-old daughter has significant mental health challenges and has been hospitalized multiple, multiple times.  She is currently in a residential treatment facility because that is the best and only way to keep her and our family safe.  Our family lives daily on the battlefield of mental health; we have scars and are battle hardened.  My son is a resilient and compassionate sibling, one who even at ten years old instantly understood why and how Robin Williams might consider suicide, what mental illness may have done to his spirit, how it may have touched his family.  My son and I thought about how our family could help other families and we thought up the “Karaoke Challenge”.

  • Join us and start your own “Karaoke Challenge” and call your friends and family out! 

Our “Karaoke Challenge” is that people record a video of themselves (and their children if they have some) singing a karaoke version of a song that makes them happy and post it on Facebook.  Then they donate $10 to the Children’s Mental Health Network.  If they don’t want their friends and family to see how horribly they sing, they can donate $100.  Then they have to challenge three of their friends to do the same.  We have also asked that everyone post their videos on the “Where’s Your Ribbon” Facebook site that I have set up for people to show how they are raising awareness for Children’s Mental Health usually wearing the green mental health awareness ribbon.  

My son picked the first song; he and I recorded our karaoke version, challenged six friends (because there were two of us in the video), they have since made their own videos and donations, challenged their friends, etc.  My hope is that this goes viral like the “Ice Bucket Challenge”.  It has put a huge smile on our faces and given us several belly laughs watching our friends attempt karaoke.  I’m not sure, but I think Robin Williams might be proud of this challenge, making people laugh, helping children, and raising money and awareness for mental health. 


About Linette Murphy 
linetteLinette Murphy is the busy working mom of two children.  She has advocated on the front lines for her "complex and interesting" daughter's mental health care needs from emergency rooms, residential facilities, classrooms, inpatient hospital facilities, and even the state house.  She is always looking for ways to help in her community and finds small but meaningful and personal opportunities to improve the lives of children she comes in contact with who are marginalized because of the stigma surrounding mental health in our society. 

The neuroscience of complex problem solving in systems of care: Three strategies for tapping the power of your non-conscious

0 Comments | Posted

problemsolveWhat happens in our brains when we solve problems?  First, consider that there are different types of problem solving in human service system reform.  There is linear problem-solving, which includes problems that have one solution and are usually often better solved analytically.  An example of a linear problem is balancing a budget.  Complex problems, however, have more than one solution and are solved much better with a different kind of thinking.  They require non-conscious thinking.  These types of problems are sometimes referred to as insight problems.  Complex problems are nonlinear vs. linear and are different in that they don’t have obvious solutions or sequential steps to follow.  These types of problems require creativity- the ability to combine information in a whole new way.  Surprisingly to many leaders we work with, rational conscious thinking is not the best way to solve these types of problems. 

Insight 
Complex problems need creative solutions that come to us in the form of insights.  What exactly is an insight?  When we have an insight, as described by Mark Jung-Beeman at Northwestern University, what is not obvious becomes obvious to us.  These are also referred to as A-Ha moments.  They involve non-conscious processing and are at the heart of innovation at the individual, team and systems level.  Insight comes to us suddenly and when we are not putting our focus on the problem.  This is why you may have noticed that some of your biggest moments of A-ha have arrived in the middle of the night, in the shower, while cooking dinner, or when you were driving.  Being able to reinterpret information in a different way and pull together remotely linked ideas to create a novel solution to long standing problems is not something our conscious brain, or prefrontal cortex, is best used for.  It can actually hinder our ability to hear insights, those quiet signals our non-conscious brain sends to us when we make new connections that lead to big ideas. 

To tap into the power of your non-conscious brain, try these three strategies:

  • Decrease anxiety levels
    High levels of anxiety create a lot of noise in the brain and inhibit our ability to have and hear creative insights.  Insights are the result of a very small number of distantly associated brain cells talking to each other.  To compare, deciding what to eat for breakfast involves millions of brain cells having a conversation with each other.  An insight only involves a few thousands of neurons talking to each other.  This is why we have them when our brains are quiet, and activity level is low.   To illustrate, imagine you are hosting a party and a guest knocks at your front door, the music is blasting, and you are out on your back deck enjoying conversation with other guests.  You will probably not hear the person knocking at your front door because the noise level is too high to hear
    the knock.  To be able to hear it, you would need to turn down the music.  It is a similar situation in our brains in that when anxiety levels go up, so does the noise level, making it very challenging to hear quiet signals coming to us from our non-conscious in the form of creative ideas.  The key is to keep yourself and others around you in a positive mood where anxiety and noise levels are low.
  • Break your mental set 
    As noted by Jonathan Schooler, professor of psychology at the University of California in Santa Barbara, to overcome an impasse we have to experience a shift in perspective – a break in our mental set.  It is our natural tendency to project interpretations onto situations based on our past experiences.  Unfortunately, this hinders our ability to see a different perspective that is often needed to move change forward.  To illustrate this, let’s practice right now.

    What do you see in the image below?  Take a few seconds to describe what it is. rabbit 
    Perhaps you see a rabbit?  Or maybe a duck?  Depending on what you initially saw, when you did see the other perspective, it probably came into your awareness unexpectedly, and you thought something like “yeah, I see it now.”  When you are able to see both the duck and the rabbit, you have the ability to shift between the two different ways to perceive the image.

    One of the biggest obstacles to breaking a mental set is analytic thinking, also known as rational thinking.  To solve a problem with insight and creativity, we have to stop trying so hard.  Focusing on the problem and putting effort into finding the solution does not create the mental state conducive to having an insight.  Engaging in analysis with our rational brain constrains our ability to creatively solve an insight problem by further cementing a particular perspective or mental set.  This often disrupts the ability to see different perspectives.  Consider the discovery of the sticky note.  The glue that didn’t stick so well and seemed to have no value at all was considered a problem until someone broke their mental set and realized that a glue that didn’t stick that well could actually be a good thing. 

  • Try taking a step back 
    Sometimes if we want to experience creative solutions to long standing problems, we have to step back so that we can see the bigger picture.  A metaphor to illustrate this is seeing the forest instead of focusing on the trees.  Studies show that people are more able to solve problems if they visualize or imagine themselves in the future solving their problem.   This promotes a form of stepping back which produces more creative ideas.  Studies also highlight that taking a step back from the problem leads to a more systemic global perspective, which helps with seeing the problem from a distance.

    In addition, research tells us that it is much easier to take a global perspective on a challenging situation when we are in a positive mood.  Negative moods are associated with a narrow focus, sometimes referred to as tunnel vision.  When faced with a complex problem, allow your brain to gain some distance from the problem and notice how many more creative ideas bubble up to the surface. 

Implications for Leadership and Organizational Performance 
The biggest problems facing system of care leaders and child and family serving organizations are complex (insight) problems that have multiple ways they can be solved.  Anxiety, perceptions, and conscious rational thinking aren’t so effective for creatively solving these types of problems.  For system of care leaders, if may be extremely beneficial to consider ways to tap non-conscious resources as a strategy for increasing innovation and creativity within their organization.  This is what neuroLeaders do.  They practice flexibility in matching the mental state to the type of problem that needs to be solved. 

If you are interested in learning more about becoming a brain-based leader, click here!

References 
Jung-Beeman, M., Collier, A. & Kounios, J. (2008).  How insight happens in the brain: Learning from the brain.  NeuroLeadership Journal, 1, 20-25.  
Schooler, J.  (December, 2010).  Insight: Getting to ‘aha.’  NeuroLeadership Summit.  Lecture conducted from Boston, MA. 


About Laurie Ellington
laurie
Laurie Ellington, MA, LPC, PCC, RCC, HMCT, brings 20 years of experience in the fields of coaching, training, consulting, and behavioral medicine- helping individuals, family systems, state and local government, and non-profit organizations change the status quo.  Combining research from contemporary neuroscience, modern physics, positive psychology, systems thinking, and intelligent energy management, Laurie helps leaders use science to dramatically improve performance, accelerate change, and transform culture.  

Laurie is the co-founder and Chief Executive Officer of Zero Point Leadership™ and co-Founder of neuroLeader University.  She is a Licensed Professional Counselor, ICF Professional Certified Coach, Certified Brain-Based Leadership Coach, and HeartMath Certified Trainer.  Laurie is also a faculty member with the Office of Personnel Management Center for Leadership Development, where she teaches government leaders the neuroscience of leadership and the science of leadership resilience. 

Advocates dialogue for meaningful mental health reform, pure and simple

1 Comment | Posted

The advocates dialogue on assisted outpatient treatment held earlier this week was a defining moment for the Children's Mental Health Network. At the heart of the Network is the determination to be a "collective voice" of those dedicated to improving services and supports for children, adolescents, young adults and their families. This dialogue was that and more, and is emblematic of who we are as a movement. Network faithful should be proud.

Eight brave advocates spanning the spectrum of opinion on the topic of assisted outpatient treatment, came together to break bread, enjoy the spirit of each others company, and share the pain and frustration that is inherent in dealing with decisions affecting personal choice.

At the end of the dialogue, I asked each of the participants to do a brief writeup of their reflections on the experience of coming together. If you do nothing else, read each of the personal reflections. The writings will give you hope and encouragement that we, the people, can lead the way on this issue and provide useful guidance to legislators as they work to develop meaningful mental health legislation. 

HR 3717 has raised the most passionate discussion about the mental health service delivery system in America in a long time. The idea for holding these dialogues emerged from a spirited discussion between myself, Martin Rafferty, Congressman Murphy's Chief of Staff and key legislative staff. For that, all Network faithful should thank Congressman Murphy for shining a bright light. You don't have to agree with him, but you should thank him. 

Now it is our turn to roll up our sleeves and get to work. We will be convening a dialogue in late September to continue our focus on assisted outpatient treatment. Our long-range plan is to hold dialogues on all of the key issues raised during the discussion of mental health reform this past year. Remember Network faithful, the goal is meaningful, effective and comprehensive mental health reform, pure and simple.

*   *   *   *   *   *    *   *   *

scott

Scott Bryant-Comstock
President & CEO
Children's Mental Health Network
 

Reflections on the AOT dialogue

0 Comments | Posted

The personal is the political. My thirteen years as a mental health activist have been fueled by deep tragedies. I was born to two parents who were diagnosed with schizophrenia and bipolar disorder. I had the misfortune of spending 30 years of my life helplessly watching them steadily decline until they both died quite young. My mother, once a promising young artist and poet, was under some form of outpatient commitment and guardianship for large swathes of her life. She was so traumatized by the coercive “treatments” that she was subjected to in Milwaukee state hospitals — including forced medication with antipsychotic drugs, as well seclusion and restraint — that she fought further help, until she died at age 46 due to the effects of antipsychotic-induced metabolic syndrome and a broken heart.

My father, who had an encyclopedic memory and was full of ambitions in the technology sector, largely complied with his mental health treatment, but never had a good quality of life, either. Though our family did our best to support him through a maze of broken systems, he was largely isolated in his community, and was so overmedicated that he slept for 18 hours a day. No one would hire him, and he was thwarted from achieving his dreams. He died suddenly and shockingly at age 63, also due to toxicity from extreme overmedication and a broken spirit.

And I myself have also struggled with psychiatric disability and the medical/social responses to it for all my life. As an adolescent, I spent much of my adolescence marking off the days in various facilities and institutions. I was given many diagnoses and plenty of pills, but was denied compassion, education, dreams, opportunity, and hope. As a young adult, I almost ended up spending my life in a decrepit, filthy, frightening group home, where I was told I “belonged.”

But I managed to get on a different path — in large part, due to the support of my family and supportive educators, as well as discovering the movement of my peers who understood me, because they had similar experiences with psychiatric care and society’s stunning apathy and lack of compassion. There, I found true belonging.

We all agree that our systems are broken. The problems we face are grave. Young men in distress are opening fire in schools and communities. Four people with psychiatric disabilities have been killed by the police in the last two weeks. People are warehoused in prisons and systematically abused; left to wander the streets fighting their voices; are dying by suicide in droves; lack access to basic human needs such as housing, education, meaningful work, and social connection; face blatant discrimination and scorn in all spheres of life; and have little to no options in empathic, services or supports for themselves or their loved ones. I think the folks who are reading this letter are well aware of what we are dealing with here.

But advocacy groups, the general public, and Congress, face a clash of perspectives about what to do to fix this mess. Over the last 13 years, I have come to see how opposing views in the mental health advocacy world around liberty and privacy, whether “right” or “wrong,” have blocked the social justice we all want to see.  These divisions have led to a situation where we all lose. But the people who lose most are the most voiceless and powerless in our society. People like Kajieme Powell, a man with a psychiatric disability who was gunned down by police in St. Louis recently. Or Andre Lane, an inmate who was brutalized by COs at Riker’s Island. Or Esmin Green, who was involuntarily committed to King’s County Hospital and died after 24 hours in the waiting room, in line to get “treatment.” Or foster children who are given drugs, not love

Breaking the cycle of violence and suffering 

I’ve been learning about the concept of dialogue since I was in college working for justice and peace in the Middle East in the mid 1990s. I found mentors in Len and Libby Traubman. Len and Libby have been champions of the “public peace process,” based on the premise that while governments are the official bodies that make laws and agreements, “newer ideas and sustainable implementation depend on public consent and involvement.”

I’ll be honest: when Scott asked me to participate in a dialogue with some folks who have been diametrical opponents in the policy sphere, my first internal reaction was fear and “hell no.” But then I remembered what my mentors had written years ago – the first step is simply willingness to engage and to keep an open mind and heart: 

  • Sensitive to political or even physical risks, citizens may be reluctant to talk with "the enemy." The most likely participants are those who have courage, and who recognize that current methods are not working and could lead to future failure, even disaster.  

So I immediately said yes, despite my trepidation, and joined the “Defiant 8.”

Dialogue is very foreign to our conflict-ridden, debate-based society, which starts from our most divisive issues and invites endless rounds of verbal and written combat that generally serve to deepen entrenched positions. I suspect that all too often, debate shuts off the very innovation and creative thinking that we desperately need right now. We’ve got lots of intelligence in this world. What is lacking is heart.

Getting together as we did, in the spirit of dialogue and a willingness to listen, reconfirmed for me that we have far more common ground than issues of contention. 

I don’t know what is to come, but I have no choice but to remain hopeful in these challenging times. I can’t afford to sit in despair.

My hope is that we can begin a small ripple effect in our communities, generating the will for social justice. Until we do that, these deep and painful divisions will continue to be played out in our communities and in Congress, and we will never get the kind of excellent, comprehensive bipartisan legislation (and the public will to implement it) that struggling American people and families need to achieve our most cherished ideals of life, liberty, and the pursuit of happiness. 

*   *   *   *   *   *    *   *   *

Leah Harris is a mother, storyteller, survivor, advocate and the Director of the National Coalition for Mental Health Recovery. She has written widely to promote human rights, dignity, healing, and self-determination, and has spoken at advocacy/activist gatherings and conferences including NARPA, Alternatives, and the National Conference on Organized Resistance (NCOR). Her writing has appeared in publications including Off Our Backs: a Women’s Newsjournal, Adbusters.org, CounterPunch, Street Spirit and theicarusproject.net. Her spoken word album, “Take Refuge,” chronicles her journey from suicidal patient to human rights activist. 

We came, we spoke, what now?

0 Comments | Posted

I live in what is sometimes called the "bluest state." Advocacy for all rights -- educational rights, human rights, legal rights-- is strong here. When the arguments about Assisted Outpatient Treatment (AOT) began, it seemed so obvious that no one's rights should be limited or reduced. Who would think that was a good idea? I wasn't sure that AOT had much to do with me or the families I know. And yet....

I started to listen to the stories of broken systems, of desperate measures in a different way. I was personally lucky that when my son became an adult that our life didn't feel that desperate. It could have. But other parents tell stories of their young adult son or daughter, living still at home as so many of their peers still do, rejecting treatment and turning away from services. There are often younger brothers and sisters there too, watching as a terrible crisis happens, or the police are called. Parents say, If they were younger I could insist on treatment or even go to court. It's still my job to make things better, they say, and make things better for all of us in this family. But I feel helpless and sometimes out of options, they tell me.

Those voices and stories were in my mind and heart when the Children's Mental Health Network created a meeting, and space for all of us to talk and to listen. We talked about our experiences and our passion. We talked about our hopes --- that a mental health bill can create change that is thoughtful and needed and meaningful. We talked about our fears -- that when you give someone a legal hammer that everything might look like a nail. And I thought about all the stories that I carry in my own heart, my own and many others.

Opportunities like this one rarely come along. The Defiant 8 had a difficult conversation, not because it was contentious but because we brought our hopes and fears with us. But they sat in our back pockets while we listened to each other with respect and caring. I believe that will create a way forward.

*   *   *   *   *   *    *   *   *

lisaLisa Lambert is the executive director of Parent/Professional Advocacy League (PPAL) and a Children's Mental Health Network Advisory Council member. Lisa Lambert became involved in children’s mental health as an advocate for her young son in 1989 through the CASSP family network in California. After moving back to Massachusetts, she began supporting families whose children and youth had behavioral health needs. Her areas of expertise include mental health policy, systems advocacy and family-driven research.

  • Sign Up Now
  • Take Action
  • Contribute