false
Catalog
Who is NAMI? An Overview of the Programs and Servi ...
Lecture Presentation
Lecture Presentation
Back to course
[Please upgrade your browser to play this video content]
Video Transcription
Hello and welcome. I'm Tristan Grindow, Deputy Medical Director and Director of Education for the American Psychiatric Association. I am so pleased that you are joining us for today's SMI Advisor webinar, Who is NAMI? An overview of programs and services available for people affected by mental illness. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness, is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts from across the SMI clinician community, our interdisciplinary effort has been designed to help you get the answers you need to care for your patients. Now I'd like to introduce you to the faculty for today's webinar, Dr. Terry Brister. Dr. Brister is a member of the SMI Clinical Advisory Expert Team and serves as the Director of Information and Support at NAMI, the National Alliance on Mental Illness. She's responsible for the development of new programs and ensuring the overall quality of NAMI's existing programs. She's the author of NAMI Basics, the signature education program for parents and other caregivers of children and adolescents with mental illness and co-author of NAMI Homefront Education Programs for Families of Service Members and Veterans Who Are Experiencing Mental Health Challenges. Terry, welcome back and thank you for leading today's webinar. Thank you, Tristan, for that introduction. And NAMI is so excited to be part of the SMI Advisor Initiative. As someone who worked in community mental health centers for 20 years before coming to NAMI, I know firsthand just how valuable the resources that are available through this initiative are going to be for professionals working in the field. And I also want to thank each of you for making time in your schedules. I know how busy those are to join this webinar. So with that, we will move on. I have no disclosures to reveal. And you see the objectives for the presentation today, but what I want you to hear is that my primary personal objective is to provide you with an awareness of what's available for you from NAMI that will help you as you provide services and treatment for the individuals that you serve in your communities with mental illness. And also to help you understand how NAMI programs and services can assist you and be a complement to your treatment plan. So with that, we will move on. NAMI is an organization that many of you, I hope, have at least heard of, but may not be particularly familiar with what we do or how we do it. And NAMI started in the late 70s in Wisconsin, actually, around a kitchen table with a group of families, primarily of adults with schizophrenia, who were at a loss, quite frankly, of what to do for their loved ones. They had kind of hit dead ends with the treatment process. They weren't finding a lot of information for themselves and started meeting together to help each other. In 1979, that group made the decision that there needed to be a presence in the Beltway area to advocate nationally for adults with mental illness, and so they incorporated. So we started as a grassroots organization, if you will, around a kitchen table in Wisconsin, then developed a national presence, and then several years later decided that there needed to be a designated state organization in each state to help keep things consistent. So NAMI is actually now a three-level alliance that consists of a national organization in Arlington, Virginia, of 50 state organizations. We have a state presence in each of the states, and there are more than 600 local chapters or affiliates. Each of these is a separate private nonprofit, but we all work together in an alliance to collaboratively provide information, support, advocacy, and education to individuals affected by mental illness. We're a group primarily of staff and volunteers. The majority of the people who were involved at NAMI who helped provide the programs and services that we deliver are actually volunteers. Many of the state organizations are either run by volunteer boards or even have a volunteer executive director, but everyone who works at NAMI or who volunteers at NAMI gets it. We all have that lived experience. That's what separates NAMI from many other mental health organizations, is that we do speak from our lived experience. We're people who either have a mental illness ourselves or we're family members of people with a mental illness. We've all had experience with the challenges that we face in life when mental illness is at our house. We can literally loop-lump everything that NAMI does into these four categories, awareness, support, education, and advocacy. We frequently think about these as the four legs of the stool that is NAMI, and everything that we do falls into one of these categories. My focus today with you is going to be not on the advocacy leg, but on the education, support, and awareness components. I want to talk to you specifically about NAMI's programs that are offered. We have three different types of programs that we support at the national level, and one of the things that's probably important for you to understand is that we develop these programs at the national organization. I'm involved in much of the content that's in the programs. We have subject matter experts that help us develop the content. We have 10 what we call national programs that we develop. They're our intellectual property, but we license them out to our affiliate and state organizations. We develop tools and resources to be implemented in the field where you're working, where you're serving people. All of these programs are peer-led, always. There are always two leaders, so if it's a NAMI class, it's taught by two trained volunteers. If it's a NAMI support group, it's facilitated by two trained volunteers. If it's a presentation, there are two presenters. Many of the people that we train to do the programs may be professionals. They may be therapists. They may be clinicians. There's a child psychiatrist who teaches NAMI basics in Alabama, but they're trained to teach it the NAMI way, and when they're teaching, they're teaching it as a peer, someone with lived experience, not based on what they do in their professional life. All of the programs are run and developed on a train-the-trainer model, so we go into a state and train people how to teach a class. People teach those classes, and then once a year, we do a national training of trainers where we train people to go back to their states and train more people. So it very much is a volunteer army movement type of model. Our trainings are all two-day, intensive workshop trainings. All of our programs are manualized with the curriculum. So there are models for each of them so that we make a very strong effort to ensure fidelity. And if you think about it kind of like the AA model, and I'll talk about that in a minute when I'm on support groups specifically, so that you know if you go to a NAMI support group for people with mental illness in one city, and then you go across the country and you're in another city, you can go to a support group in that area, and you're going to see the same model, the same format, and be treated the same way. Fidelity is critically important to us in our programs. I want to start by talking to you about a couple of the presentation programs that we have available that you may hear about in your community, or you may want to get more information about in your community that could be shared with the groups that you work with or audience that you work with. The first one is Family and Friends, and this is actually our newest presentation. This was just launched last year. It's a four-hour seminar that informs and supports people who have loved ones with a mental health condition. So it's specifically for family members, friends, relatives. The participants learn about diagnoses. They learn about treatment options, recovery, communication strategies, and we introduce them to the concepts of crisis preparation and what resources are available for them. This program has actually been translated into Spanish, Arabic, Chinese, Korean, Farsi, and Vietnamese. So again, as one of the awareness tools, this is something that we wanted to be able to for people out in our grassroots areas and communities to be able to share with people regardless of their language background. So we wanted to have all of these options available. Anyone who's been trained to teach one of our NAMI family programs, like Family to Family or NAMI Basics, is eligible to teach this program as well. NAMI Ending the Silence is one of our more unique presentation programs. This is a 50-minute presentation that was designed for middle school and high school students, designed specifically to be presented in a class period. It includes a 20-minute PowerPoint presentation by a family member. Typically this is a parent of a young adult, a youth or a young adult with a mental illness, who talks about warning signs, you know, what do you look for? What is mental illness? You know, when is it okay, when is it not okay to keep a secret? Then there's 20 minutes where a young adult who's living well in recovery shares their story. They talk about what it was like for them when they were in school, what hurt, what helped. It's very recovery focused and designed to give hope. What happens frequently in these presentations is the presenters have students who come up to them at the end of the program and share something about themselves or about their family member. There's also a version of Ending the Silence that's designed for presentations to school staff so it can be done in staff development sessions and for families so that can be made available during PTA meetings or other gatherings of parents at a school system. So now let's talk about support because that really is at the core of how NAMI was founded to help family members of people with mental illness find support for each other, provide support for each other. What we know is that by helping other people, we help ourselves and we very much hear that from our volunteers and from our program leaders. And you see a conglomeration of different things that are listed here. We provide virtual support through our OK2Talk platform, which was designed for youth and young adults for them to be able to share their stories, share artwork, share poetry, but to interact with each other. We have a variety of other social media platforms that offer people the ability to share their stories and connect with others. We also have our NAMI Helpline, which is staffed during the weekdays by volunteers and staff at the NAMI office in Arlington. We take calls from around the country. We get about 4,000 calls a month, if I remember the number correctly. We also have a Helpline email, info at NAMI.org, and we get inquiries all the time. Frequently those inquiries are about how to find a provider, how to pay for medication, how do I find a DBT program in my community. So we get, it runs the full gamut. And our Helpline volunteers certainly don't have the answers to all the questions, but we very much look at ourselves, I refer frequently to us as kind of a spotter web. If we don't have the answer, we try to connect people to someone else who does have the answer or who can help them find it. Many of our NAMI state organizations offer warm lines that are operated at their state level or at the local level. For example, in larger cities like Chicago or Metro Baltimore or New York City, man their own Helplines and warm lines. Again, one of our caveats at NAMI or one of our taglines at NAMI is we don't have all the answers, but we try to help people find them. So we partner with people like the Crisis Text Line and the various suicide prevention groups to be able to link people to those resources, things that we don't provide at NAMI, but that are available through other people through our partnerships. We also offer in-person support groups, NAMI Connection, and you see the logo there on the slide. NAMI Connection recovery support groups are very, and this is probably the thing that's the most similar to the AA model, which most people are familiar with, where if you go to a NAMI Connection recovery support group in Jackson, Mississippi, where I live, or if you go to one in New York City, New York, the model is going to be the same. The meetings are going to open the same way, close the same way, they're going to be processed the same way, and people are going to be treated respectfully the same way. The support groups, again, are all peer-led. So the Connection recovery support group, which is for people with mental illness, they don't have to have a specific diagnosis. They don't even have to have a diagnosis, but if they're experiencing symptoms and they think something's going on with them, they can attend the support groups. They're led by people who have mental illnesses themselves and are in recovery, who've been certified through one of those structured two-day training workshops where we teach them the skills to facilitate a support group, to follow a model, how to problem solve, how to handle crisis topics that come up. Again, fidelity is key. So think about AA when you think about the Connection support groups and that there's fidelity to the model. We also, and before we, let me go back to that slide, the other, and there's not a logo on it for it, but we also offer a NAMI family support group program that's a support group specifically for family members. And family at NAMI doesn't necessarily mean family of origin, or marital partners, or adult children. It means the people that you consider family in your life. So it may be the next door neighbor, but they're the person that helps you get back and forth to your doctor appointments or to your group therapy session. They're the person who loves and supports you. So the family support groups are for those individuals. They're led by, again, people with lived experience. So they're led by family members of adults with mental illness, and again, have a two-day training workshop that they go through to be certified to run those support groups. All NAMI support groups meet at least once a month. They meet in the same location at the same time every month. Many of them in larger cities meet weekly, specifically the Connection recovery support groups for people with mental health conditions. They meet weekly because, again, typically those individuals do need more support or need something more on a regular basis. All of our programs, and I haven't mentioned this yet, but all of the programs that NAMI offers are available free of charge to the participants. The NAMI affiliates and the state organizations raise the money to train the volunteers and buy the materials and supplies and pay for the space where the classes and the meetings are held. But all of these programs are offered free to people who attend the classes. So let's talk about education now. And this is really where NAMI got its start in the education and support arena of structured, manualized, evidence-based programs and practice. NAMI Family to Family, our flagship, was the very first program that was developed by NAMI, and it was actually written by a psychologist, Dr. Joyce Berland, who lived in Vermont at the time, and Dr. Berland's daughter has schizophrenia. She went back to school and got a doctorate in psychology, thinking she would be able to interact with her daughter's care providers better. She still wasn't getting what she felt like she needed. And in 1991, she developed the NAMI Family to Family course, which is basically a psycho-education type program, but it's taught by family members, not by a clinician. This program is a 12-session course, can be taught once a week, or it can be taught two classes a week for six weeks. We never teach more than two classes a week because much of the information is very emotionally heavy, and we want to make sure that family members attending the class have time to process it. And much like the support group, family, in this sense of the word, means whoever someone with a mental illness considers their family, their support person, the person that's important to them in their life. The Family to Family program is the core or the crux for all of our other education programs. They're all built around the same types of principles. We teach that mental illness is no one's fault, that having a mental illness, either in yourself or in your family, is a traumatic event in and of itself. So there are predictable stages with how we adapt to that as the family member or as the person with the illness. We teach the biology of mental illness. We teach them about the brain so that they can understand what the providers are saying to them so they can understand the side effects of the medications. We want them to be able to make informed treatment decisions so we help them understand a little bit about the biology of mental illness. We provide a thorough treatment overview. We let them know about different treatment options. We let them know about looking for evidence-based practices, what that means, what should you be asking your provider? We teach them general communication and problem-solving skills that they can use within their family to help life be a little less chaotic. And we teach them the importance of advocacy, not just advocating at a policy level, but advocating for themselves and for their loved ones with the treatment team, with the insurance carrier, with the healthcare system, with the school system, if it's a young adult who's in college. So again, teaching them about the importance of being able to speak up and stand up for themselves. NAMI Homefront is a six-session course. Family to family is our longest. NAMI Homefront is a six-session course that we refer to as a cultural adaptation of family to family that's geared toward family members of service members and veterans. This one looks at the same types of issues that family to family does, but also takes a deeper dive into the additional layers of stigma that service members and veterans have to contend with in navigating their mental illnesses. NAMI Homefront, and I should have mentioned, NAMI Family to Family is taught face-to-face, in-person. NAMI Homefront is available as a face-to-face, in-person class, but it's also available in an online, in real-time option. So we offer this program twice a year in each of the time zones across the country, typically at night, so that people, family members, can call in and join a webinar. We do it in Adobe Connect. It's still six sessions. We have times where they share there, they come on screen with the video cameras, but what we've found is the majority of the people who take the class online are family members of active service members. The majority of the people who were taking the class in person are family members of veterans. And again, we feel like that speaks volumes to the stigma that especially the active duty service members continue to experience. NAMI Basics is our education program for parents and caregivers of youth and young adults. It's designed specifically for family and caregivers of people who are younger than 22. We talk a lot in this class. Again, it's much like a cultural adaptation of family to family, and that we still teach about the basics of the illness, about the traumatic experience of having a mental illness in your life. But we also focus heavily on how to navigate the school system and the healthcare system. Because as you all know, the rules change from state to state about what level of input the child has in their own treatment plan, at what age some of that changes, the whole concept of the black hole that is transition age. You know, when our child moves from a 17 years and 11 month old youth with mental illness to becoming an 18 year old adult with a mental illness. So we teach those concepts in this course specifically. I should have mentioned, I'm not sure if I did, NAMI Family to Family is evidence-based. It's been heavily researched by Dr. Lisa Dixon, one of the leading psychiatrists in the first episode psychosis field. NAMI Basics is also an evidence-based practice. We are actually in the final stages of a control group, a randomized control group study of the course with the University of Texas at Austin. That will be wrapping up shortly. Another exciting thing that's new with NAMI Basics is we are in the final stages of piloting an on-demand version of this course. It's the same curriculum, much like NAMI Homefront, we have the option of people taking it online in real time, all six sessions. With NAMI Basics, what we hear consistently from parents of youth and young adults is they're so busy in their day-to-day life, often with other children, that they don't have time to come to an in-person class or time to even join a real-time online class. They wanted something. They wanted an option for being able to, on-demand, click through the information at their own schedule. And if they could only take part of class one tonight and the rest of it tomorrow night, that's what they wanted the option to do. So we have a NAMI Basics on-demand that we plan to launch for the general public this summer, but that, again, is in the final stages of development right now. We're very much about meeting people where they are and getting the information to them in whatever manner it's easiest for them to access it. NAMI Peer-to-Peer is our education program for adults living with a mental health condition. Doesn't have to be a serious mental illness. It may be another type of mental health condition, but it's very much for the individual who is, many of them are in recovery. Some of them are at early stages of recovery. It's very much, this was redone just this past year. We launched the new version in 2018. And it has a focus now of wellness and overall health. It addresses issues, not just the issues of mental illness and some of the same concepts that are in family-to-family where we teach about the biology of mental illness, about the stages of coping or adapting to having a mental illness in your life. But we also talk about all the different treatment options, the type of treatment providers, what evidence-based practices are. So again, the same type of information we're giving to families, we give to the individuals themselves. But a component in each of the eight classes, because it's an eight-session course, a component of each of the eight classes is on physical health and wellness and emphasizing how we only have one body and our mental illness and our mental wellness is closely connected to our physical health. So that's one of the underlying factors of that. NAMI Provider is a unique program. This is a program that was developed in the early 90s by Dr. Berland as well. The most recent update for it was in 2017, but this is a five-session program, two and a half hours each, that was designed specifically for healthcare providers. It's taught by a team of three people, a family member, an individual in recovery, and a mental health professional who is also either a family member or who lives with a mental illness themselves. It's always taught by that panel of three people. And it informs providers about the lived experience. We don't teach them about brain biology and about mental illness. We don't teach them the things that you and they already know. What we teach them about is what it's like from the perspective of the family member and the person. We address things in the class like treatment non-adherence, medication non-adherence. We talk about why do people stop taking their meds? Why do they stop coming in when things seem to have been getting better? And you hear the perspective of the family member and the individual, as well as the mental health professional who is also in one of those categories. Again, we teach them about, we inform them, we help them better understand the reactions of the patients and the family members. And again, why they may be having the various responses to treatment that they do. And the undercurrent of this course is really promoting the concept of the need for providers to engage with the family member and the patient as part of the treatment team so that we can achieve the best outcomes for the individual. This is a five session course, two and a half hours each, but is also available as a four hour seminar that hits the high points because it's tough to be able to get a healthcare organization to shut down for 15 hours of an in-person class. Many do, NAMI South Carolina, for example, has been teaching this course actively in several of their healthcare systems for the last 10 or 12 years. NAMI Houston, Texas teaches this at the Menninger Clinic that's there in their area. So it's their pockets around the country that have had a lot of good success with getting the program in. One of the most exciting things to date that I'm extremely proud of is that the last week of May, this program, NAMI Provider, is going to be taught to all 225 DO students, the third year students at Des Moines University College of Osteopathic Medicine. Last year, they made the NAMI Provider Program part of the required curriculum for third year medical students. We did a pilot last summer with 45 of the students that were back on campus for a week in the summer. We had great results from the evaluation process in that, but the last week of May, this course, all five sessions is gonna be taught to 225 medical students. They'll be divided up into six groups. They're all gonna get it at the exact same time. So there will be six teams of three people teaching these groups on the campus, and we are super, super excited about this. There's a very rigorous research evaluation study that's going on as a part of this, and we're hopeful this will help us get to the point of considering NAMI Provider and evidence-based practices as well. So wanted to be sure to share that with you all. Some of the more general or higher level, less touch awareness initiatives that NAMI's involved with that you may hear about in your communities as well are our walk team. There are, I can't remember how many, but there are several hundred NAMI walks that take place across the country. Usually they're statewide, held in the capital city typically, but many states do a variety of small walks around their state. There's also NAMI FaithNet, which is a group, a network, if you will, of faith leaders who have an interest in making sure that mental illness information is available in their communities. NAMI In Our Own Voice is a two-hour presentation that's provided by individuals who are adults who are living in recovery, and they provide this presentation to the general public, frequently to Rotary Club meetings, anywhere the general public is gathering to talk about what was it like? How did I know when I was developing this illness? What helped me get better? And what is my life like now? And it's a combination of personal story and video clips that supplement the story. And again, it's a two-hour presentation. We have several places around the country where this program is presented once a week at inpatient psychiatric units, so that the individuals who are in inpatient treatment have an opportunity to hear from someone who's been where they are and has gotten to the other side of it and is living well and recovering. So in addition to those education programs, those support groups, those ongoing activities, if you will, NAMI has developed a series of a multiple, all types, a variety of different resources and tools that are available for people with mental illness, for the family members, for the caregiving community. These are just three examples of the type of resources that we have. They're certainly not the only three. Starting the conversation, we developed in collaboration with the Jed Foundation, and it's focused on college age youth and their mental health. We know, I'm preaching to the choir with those of you who were on the phone, that frequently the symptoms of serious mental illness begin in youth and that young adult age when people are going off to college. So we developed this guide for campuses to have to help them get conversation started on their campus. Navigating a mental health crisis, we launched last year. That's a tool that I've wanted to have in my hands when I was at community mental health centers. It's something that I wanted to be able to have with the Chancery Clerk's Office, the Sheriff's Department, the Emergency Department, something that could be put in family members' hands or the individual's hands when there was a crisis and things were kind of put on hold. Frequently, an analogy I use when I'm making presentations around the country is if you break your leg and go to an emergency department anywhere in the United States of America, you're gonna pretty much get the same treatment. And you're going to be told what to expect, what the prognosis is, what comes next, what to expect with the cast, everything. When you go to an emergency department or anywhere that you go for crisis services, many places where you go for crisis services, not anywhere, frequently family members and the individuals leave not knowing what to do next. They may be given a phone number of who to call the next day, not knowing if they'll be able to see someone. So this guide was developed to kind of hold the hands of the individual and the family member. It includes everything from what to say to law enforcement officers or the dispatcher when you call 911 to what to expect when your loved one goes into an inpatient psychiatric unit and how that's different than going into inpatient treatment in a general hospital setting. The things that we take for granted frequently as providers, but family members and the individuals don't necessarily know and can make things so much more stressful and even traumatizing, if you will. The guide on the left, the Circle of Care Guidebook for Mental Health Caregivers was developed in collaboration between NAMI and the National Alliance on Caregiving. I believe it was launched in 2017, but it's a fact field guidebook of one-pagers and fact sheets about what caregivers of people with mental illness need to know. Everything from differences in healthcare insurance coverage to what happens when the individual turns 65, what happens with social security and SSDI benefits. So again, the types of things that we don't naturally know. And there are a variety of guides like this that exist for people with other conditions. There are guidebooks for caregivers of people with cancer or caregivers of people with Parkinson's disease, but there was nothing like this out there for caregivers of adults with mental illness. So it's something that, and I just recently had to reach out to the National Alliance on Caregiving to ask for another reprint because we can't keep this on the shelves for people. This is something that goes without saying, we're super excited about our collaboration with the APA and the SMI Advisor Project and have very much embraced the, and feel like we've been embraced quite frankly, by Tristan and the other clinical experts that are involved in the project with bringing the families and the patient's voice to developing the educational materials. So just wanted to mention that. And finally, we feel like NAMI is the voice of reason. We advocate, I'm not talking much about the ad, I'm not talking any really about our advocacy leg of our stool here, but we're constantly advocating at the national level, looking for things that are happening across the country, assisting our state organizations with state changes that are happening with Medicaid and other issues like that where those policy decisions are made at the federal level, but then can be tweaked and fine-tuned and quite frankly decimated at the state level. So we're constantly addressing the policy advocacy issues, but also constantly working with the families and the individuals about advocating for themselves and their loved one. Just a quick snapshot. And this information is based on a Google Analytics run from July 17 to July of 2018. I got some updates this morning. Our traffic on our website is now actually a million different users a month. So that's changed pretty significantly. Our helpline inquiries have stayed about the same. So that really hasn't changed. This was from data from Brandwatch that was a snapshot from May to July of 2018 of a research study where they looked at, where do you get information about mental health? And again, you see APA, which is pink, and NAMI, which is the light green-blue kind of number are two of the primary sources where people go. So I thought that would be helpful for you to see. And with that, Tristan, I believe I am done. What I want you to hear clearly, what the message I wanna leave you with is that NAMI, we're all about recognizing it, talking about it, and getting help ultimately. So thank you.
Video Summary
The video is a webinar titled "Who is NAMI? An overview of programs and services available for people affected by mental illness" presented by Dr. Terry Brister, the Director of Information and Support at NAMI (National Alliance on Mental Illness). The webinar is part of the SMI Advisor initiative, which aims to help clinicians implement evidence-based care for individuals with serious mental illness. NAMI is a grassroots organization that provides information, support, advocacy, and education to individuals affected by mental illness. They offer a variety of programs, including NAMI Family-to-Family, NAMI Basics, NAMI Homefront, NAMI Connection, NAMI Peer-to-Peer, and NAMI Provider. These programs provide education and support for individuals with mental illness, as well as their family members and caregivers. The programs are peer-led and focus on topics such as understanding mental illness, treatment options, communication strategies, crisis preparation, and advocacy. NAMI also offers other resources and tools, such as guides on starting conversations about mental health, navigating mental health crises, and caregiving for individuals with mental illness. The webinar highlights the importance of NAMI's work in raising awareness, providing support, and promoting education and advocacy for individuals affected by mental illness.
Keywords
NAMI
National Alliance on Mental Illness
programs
services
mental illness
advocacy
education
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
×
Please select your language
1
English