Tuesday, June 24, 2014

Enough is Enough: Regulate Restraint and Seclusion in Schools

By Corinne Ruth, NAMI policy intern and Darcy Gruttadaro, director of the Child and Adolescent Action Center

The need to regulate restraint and seclusion in our nation’s schools just gained significant momentum with the release of a new report and an NPR article that highlights the need for immediate action. ProPublica analyzed data released by the U.S. Department of Education showing that there were 267,000 instances of restraining or secluding children in schools in one school year. The NPR article highlights an incident in which a young boy with autism panicked after being threatened with seclusion. When school officials tried to force him into the “quiet area” a small locked room, bones in his hand were crushed.

Despite claims that schools are limiting the use of restraint and seclusion, these unacceptably high numbers suggest otherwise. Some schools reported restraining or secluding students dozens and even hundreds of times each year. In 75 percent of these cases, restraint and seclusion was used with children with a disability including mental illness. Many of these instances of restraint and seclusion were improperly used when an emergency did not exist.

Congress has introduced The Keeping All Students Safe Act (HR 1893, S. 2036) to protect children from the unnecessary and harmful use of restraint and seclusion. This legislation allows restraint to be used when a student’s behavior poses an immediate danger of physical harm to that student or anyone else. For example a student may be restrained if they are striking other students, banging their head against the wall, “gouging their eyes”, or other related behaviors. In cases when restraint is used, the bill requires schools to notify the child’s parents and work with them to plan ways to better manage difficult behaviors in the future. The Keeping All Students Safe Act fosters a positive learning environment in schools by promoting interventions that help minimize disruptive classroom behaviors and instructing school staff in more effective ways of addressing students who may be in crisis.

Momentum is building for this legislation and we urge you to be a part by contacting your Congressional representatives to ask for their support and to use their leadership to move the legislation forward to a vote.

Friday, June 20, 2014

Hitting the Streets: Engaging People When and Where It’s Needed Most

By Mary Giliberti, NAMI Executive Director

As the Executive Director of NAMI, I get many heartbreaking emails and take NAMI HelpLine calls about individuals who are not doing well and families who are suffering with their loved one. Much of the conversation in the mental health community regarding these situations has focused on the poor outcomes, including criminalization, emergency room boarding and homelessness.

These outcomes are shameful and should be condemned. But surprisingly little attention has been paid to specific services and interventions that could potentially reduce these poor outcomes.

Engagement is a term that most people think of as a period prior to marriage. But in the mental health community, we use that term to describe working with an individual so he or she is amenable to receiving treatment, services and supports to help achieve life goals, such as employment, housing and relationships. Very little research and focus has been given to how to do this for the group of individuals who are most likely to experience poor outcomes because they express resistance to participating in any treatment or support services.

NAMI will be spending significant time and energy in the coming months on the topic of engagement—what works for those in the most need of help and how can we increase access to it.

This work begins with a STAR Center webinar on Tuesday, June 24 from 2-3:30 p.m. ET, entitled “Hitting the Streets: Engaging People When and Where It’s Needed Most.” (You can view a recording of the webinar here.)

Another STAR Center webinar is scheduled for July 22.

NAMI also has a special policy forum planned at our national convention in Washington, D.C. that will be devoted to engagement strategies. This forum, entitled “Refocusing the Conversation: Strategies for Engaging People in Needed Services and Supports,” will take place on Saturday, Sept. 5, from 1:30-4 p.m. ET.

Causes of Rejection

There has been much discussion and debate about the cause for rejection of treatment or supports. Some argue it is the result of the illness’s effect on the brain that causes a lack of recognition of the illness. Others believe it is caused by the trauma of the mental health system which often treats people very poorly and without regard to their preferences. Still others believe it is caused by the difficulties people have in accessing the kinds of mental health services and supports that they want.

 My personal belief is that all of these factors are at play with a significant effect from the condition itself. In my experience, the strength of the resistance indicates something greater than just the result of uncaring and unavailable treatment and indicates that the condition is affecting the ability to recognize the need for help. However, I also believe that the way people are dismissed by those who are supposed to help contributes to the problem. I have been angered by the’ experiences of people living with mental illness and their families who are subjected to callous behavior and even downright meanness from hospital and mental health center staff. Of course, there are many caring professionals, but we frequently hear stories of indifference and harshness. And too often, the only service offered is medication without also offering other services vital to recovery, such as cognitive behavioral therapy, assertive community treatment (ACT), supported employment and housing.

NAMI’s Priority

The reason for rejection of mental health care, however, is less important than finding a way to overcome this resistance to help an individual achieve better outcomes.

Both the NAMI’s national board and the staff are committed to continuing to work in this area going forward because we recognize that NAMI was founded to fight for those who are experiencing the worst outcomes and we believe that all people should be given the opportunity to recover and contribute to their communities.

I also believe that if we can truly make effective engagement the standard of care, there will be less controversy about assisted outpatient treatment (AOT). If extensive and intensive outreach efforts are made using what we know from research and individuals are still unwilling or unable to receive assistance, then we know that AOT is truly a last resort to avoid bad outcomes. Then it will not be a fix to a system where services are all too often unavailable to people until they go into crisis.  And, it will not be an alternative to implementing a system that treats people respectfully and tries to engage them meaningfully in decisions about their own treatment, much as we do with all other medical conditions. 

Even with such a system, AOT may still be needed to help some people take the necessary first steps on the road to recovery. But, it should be a last resort, not the first or only resort in a system that lacks services until crises occur. And engagement strategies are critically needed when someone is subject to an AOT order so progress can continue after the order expires and the individual becomes invested in better outcomes.

 At a time when national scrutiny is focused on what can be done to help people before they reach the point of crisis, efforts to identify and implement effective engagement strategies are extremely important. Rather than argue over emergency interventions, we must focus on what can be done to ensure lasting effects and better long term outcomes for all people who live with mental illness.

In looking at engagement strategies, NAMI will examine what should happen early in the course of an illness to change the trajectory both for individuals experiencing emerging symptoms of possible illness and for individuals in the early stages of psychosis where research indicates that resistance is less than later in the course of an illness. In addition, we will look at how we currently pay for services, whether the services are being paid for are those that are most effective and well researched and what can be done to create incentives to pay for those services that work the best in reducing symptoms and improving overall functioning.

We look forward to continuing this dialogue with all of you and are interested in your views. You can write me at YourComments@nami.org. I also will share your thoughts with NAMI’s national board and staff.

Wednesday, June 11, 2014

Because of NAMI Programs…

By Jacki Higgins, NAMI Education Program Coordinator

The trainees from NAMI Georgia share what NAMI programs have done for them
with Colleen Duewel, NAMI National Director of Education (far left).

From June 6-8, 2014, NAMI hosted its annual National Training of Trainers event in Arlington, Va. Throughout the weekend, the energy and excitement in the air was tangible. Over 160 trainees arrived in the nation’s capital to become a state trainer in one of six NAMI Education’s signature programs. New this year was a dual training offered for trainees wanting to be trained in both NAMI Parents and Teachers as Allies and NAMI Ending the Silence.

NAMI Education’s Training of Trainers event is an annual training, which allows experienced NAMI program leaders the opportunity to become a state trainer. Once certified, state trainers go back to their states and help expand the NAMI education programs by training more teachers, presenters, and support group facilitators.

The theme of the weekend was “Because of NAMI Programs.” Trainees completed an artistic collage of messages to complete the sentence “Because of NAMI programs. Here is what some people wrote:

  • “Because of NAMI programs, I can change the world.”
  • “Because of NAMI programs, I found hope and understanding.”
  • “Because of NAMI programs, I am healthy and can help others.”
  • “Because of NAMI programs, I am going back to school in the fall.”
  • “Because of NAMI programs, my grandchildren have the care they need.”
  • “Because of NAMI programs, I found my son again.”

All through the weekend, trainees learned and practiced the techniques necessary to be successful state trainers.

Those that attended the weekend came into the trainings with excitement and hope. Most of the trainees have taught and participated in multiple NAMI programs. They volunteer their time and passion to NAMI and to the education programs. 

While the Training of Trainers event can be a lot to digest, the trainees leave with the confidence to pass their knowledge and skills on. The mixture of trainees is amazing – some have taught multiple classes or have been facilitators for years, while others may still be fairly new to NAMI having only taught one class or given a few presentations. But the heart is there. Program leaders are the heart of NAMI programs. As long as the heart beats, the education programs will continue to grow. There couldn’t be a group of finer people.