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 I also will share your thoughts with NAMI’s national board and staff.


Dianne Farrell said...

I gather this reflects disagreement within NAMI about strategies like AOT. I am interested in advocacy strategies for local NAMI affiliates. Currently I'm engaged in advocacy for mentally ill persons and their families where we try to keep individuals out of prison and get them into treatment. I'm hoping for some insights from the National Convention sessions. I'd also like to know if many NAMI affiliates engage in such individual advocacy.
Dianne F.

Caroline Whiddon said...

Beautifully written. Thank you for your leadership!

Anonymous said...

A subject that hits all too close to home regarding my son. I'm hopeful with all that NAMI is undertaking to help increase awareness and reduce the stigma of mental illness but until there is a mass effort in this country to fund the research and treatment facilities needed with the same enthusiasm and priority as treating cancer and other physical illnesses (AND stop the caps on mental health in-patient hospitalization insurance)so many families and individuals with mental illness will continue to suffer.

Anonymous said...

I participate in AOT faithfully, but I see that not having a number of adequate personnel to handle the mass of individuals who have their weekly visit the facility has a negative effect. We (with mental illness)far out number the personnel. I am grateful to the clinicians where I attend, as they are courteous, and caring. It seems to me that in order to engage the people, we need to ensure highly qualified personnel are in place. But, I guess that is the rub.

Ron Anderson said...

Great idea. This promises to be a game changing step in the right direction. In Spokane WA we ( Smart Justice Campaign) are promoting jail diversion programs with culturally appropriate approaches to treatment and support opportunities. This plan could well satisfy the cultural competency component necessary in maintaining a theraputic environment that leads to sustainable recovery. Ron Anderson, NAMI Spokane

Martha L said...

I'm a mom who lives with the heartache of a having a severely mentally ill son wandering the streets, trying to escape his voices. He won't come home because his delusions tell him I'm an alien. He's an adult, so my legal hands are tied. I can't begin the conservatorship process because he has no legal address. He's not "gravely disabled" (really?) so they won't take him in. How can this be our best solution? When you see homeless people, remember they may have a families that deeply love them and want them to come home.

Joanna said...

I am very pleased to hear of this effort. I am a Family Support Facilitator and also help on the help line. There are many families whose loved one won't consider treatment of any kind, despite being paranoid, psychotic or severely depressed. Their son or daughter lives in the basement, and is reclusive and often verbally abusive to the parents, who fear that if they evict them (as suggested by our local mental health service) that they will end up in jail, rather than in treatment. I believe that forcing into treatment doesn't usually work, and the laws are so restrictive to protect individual rights, that it is hard to find treatment for those who don't see that they have a mental illness.