Friday, October 28, 2011

Connecting NAMI with the World

By Katrina Gay, NAMI Director of Communications

The definition of community is quietly and quickly expanding—boundaries of geography, social status, politics, economics, culture, age and more are blending together.

Beyond the NAMI Affiliates located in neighborhoods throughout the country, another type of NAMI community is quietly thriving,

With over 41,000 ‘likes’, and over one million views each week, NAMI on Facebook has emerged as a vibrant virtual community, a place where thousands of individuals can connect and offer words of encouragement, requests for support, calls to advocacy action, cries for help and messages of hope. They reveal their experiences with one another for all to see and respond. Their triumphs and tragedies, anger and joy, confusion and wisdom become part of the fabric of their shared experience, eliminating barriers of isolation for many.

Transparent and often unfiltered, members of this community are authentic as revelation of the experience of thousands of individuals, family members, friends and others offer encouragement to hold onto hope and inspiration in their daily lives.

With nearly 9,000 followers, NAMI on Twitter interacts on issues in the daily news, extending our reach and inspiring conversations, driving the debate and shaping issues of importance for people affected by mental illness. Providing access to news about mental health topics from around the country, NAMI can inform its involved community about important stories the moment they happen and encourage advocacy when necessary.

Increasing the influence of our social community is significant as we strive daily at NAMI to build better lives for the millions of Americans affected by mental illness. For in addition to traditional avenues of support, education, advocacy and inspiration found in our neighborhoods through NAMI meetings and events, through NAMI.org and through the NAMI HelpLine, we extend our reach through our social networks.

And according to data, 73 percent of the 240 million U.S. users of the Internet use Facebook each month. A majority of Americans participate, and when they need NAMI, we are there.

Because of the Internet ideas are able to move faster and more easily than ever seen before. This means NAMI can spread the importance of not only providing hope and support to all individuals affected by mental illness no matter their location but also be more effective in its mission to gain equality for all. By being able to easily contact families and individuals who are most directly affected every day it ensures the message is spread with the utmost speed. If there is stigma, we will remove it. If there is injustice, we will fight it. If there is a wrong, we will right it. If there is hope, we will spread it.

If you haven’t enlisted, I encourage you to join the discussion in NAMI’s vibrant virtual community through Facebook and Twitter. Collective and independent, it is a constant, reassuring reminder that we are not alone. Together we can work to guarantee that tomorrow will be a better day.

Friday, October 21, 2011

Early Intervention is the Avenue of Hope

By Teri Brister, Ph.D., LPC, Director of Content Integrity

For parents and caregivers of youth living with mental illness there is finally confirmation for the faith we have placed in our remarkable education program. As the creator of the NAMI Basics Education Program I am thrilled with the recent publication of an article that I coauthored in the Journal of Child and Family Studies describing a two year research study of the NAMI Basics program. The results of the study indicated that NAMI Basics produces “significant improvement” in families’ communication and coping skills.

Validation of a program we have devoted so much time to for years offers a moment of great satisfaction. As the scientific foundation for our program continues to strengthen, we can profess the benefits of our methods with ever more confidence. Specifically, the study found that:

  • Parents and caregivers who participated in the study reported improvements in self-care and empowerment, based on information and about resources, parenting strategies and self-advocacy.
  • Participants “also experienced a reduction in inflammatory communications,” through control of anger, preemption of problems, and being highly specific about expectations.
  • Participants did not report changes in “affirmational communications” within the family. However, this may simply reflect the emphasis of the curriculum.

NAMI Basics was designed for parents and other primary family caregivers of children and adolescents living with mental illness. It is currently available in 36 states through NAMI State Organizations and Affiliates. The program is peer lead, meaning that the teachers of the program are themselves parents/family caregivers of children living with these disorders. This structure creates an intimacy that few programs possess and consequently, a program one whose capabilities are unparalleled.

Monday, October 17, 2011

States at Risk

By Mike Fitzpatrick, NAMI Executive Director

Mental health matters. Budget cuts in mental health services also matter in determining how well our states are doing in meeting the mental health needs of its citizens.

The U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) recently released estimates of mental illness by state.

Using conservative methodology, SAMHSA reports that approximately 20 percent of adult Americans experienced mental illness of some kind in the past year.

For serious mental illness, involving “substantial functional impairment,” the rate was 4.6 percent—about 10 million Americans. Only 60 percent received treatment.

The state with the highest rate of serious mental illness was Rhode Island, which news media have focused on.

But there is a bigger story.

Before the nation’s economic crisis kicked-in, NAMI graded state mental health care systems based on 65 criteria. The national average was D. Most states were struggling to improve their systems, which require investment.

Rhode Island received a C grade in 2009. From 2009 to 2011, it increased mental health spending by 7.4 percent—in essence, running hard to try to meet demand.

Earlier this year, NAMI released a special report on state mental health budgets cuts. Two-thirds of states made cuts from 2009 to 2011, ranging from three to 35 percent.

Looking at he SAMHSA figures and NAMI’s special report, four of the states with the highest levels of serious mental illness cut mental health care by three to 11 percent.

They were: Idaho, Indiana, Utah and West Virginia—none which had received higher than a D in 2009. Their rates of serious mental illness range from 5.8 to 6.2 percent.

Like Rhode Island, four states with the highest levels of serious mental illness managed to increase spending on mental health care by factors of one to 23 percent. They were Arkansas, Kentucky, Minnesota and Oregon. Their rates of serious mental illness range from 5.3 to 6.9 percent.

In the SAMHSA estimates, six states tied for 10th place with a rate of 5.2 percent for serious mental illness. From 2009 to 2011, four of them cut mental health care in a range from seven to 11 percent. They were Colorado, Massachusetts, Michigan, and Ohio.

Look at the numbers. Follow the money.

Approximately a third of people living with serious mental illness aren’t getting treatment. Over the past three years, two-thirds of states have cut mental health care.

Approximately half of the states with the ten highest rates of serious mental illness are on the list of those states that have cut mental health care.

NAMI is working on an updated state mental health budget report that will be released soon.

In the meantime, we hope that governors who are preparing state budgets will keep the SAMHSA estimates in mind.

Looking toward Election Day on November 8, these are also facts to keep in mind in the voting booth.

Friday, October 7, 2011

Providing the Steps to Recovery from First Episode Psychoses

By Ken Duckworth, M.D., NAMI Medical Director

So many people have come to me over the years and expressed how confused and overwhelmed they were when they first experienced psychosis; how difficult it was to interpret their inner experience; how challenging it was to navigate the world to get help.

In conducting our schizophrenia survey I was troubled to find that there was an average of a nine year delay in getting the correct diagnosis existed in our survey respondents. As a field and as an advocacy group, we need to move the culture toward upstream information, assessment and services. Our public systems focus on downstream disability and many primary care doctors and private practitioners do not feel experienced enough in this area.

The single greatest response to the question who had been “most helpful” during the experience was “no one.” This is simply unacceptable.

With this new project, however, I am delighted to say that NAMI has begun to address these important and compelling needs. The results were collected in the 12-page report First Episode: Psychosis [PDF] and then used to direct and create a special website, www.nami.org/psychosis, filled with materials to address these concerns and provide medical intervention.

Nearly 50 percent of both individuals who experienced psychosis and family and loved ones pointed to the Internet as a vital source of information. NAMI is proud to offer a wealth of the most up-to-date information, readily available to anyone and everyone who may find it beneficial.

We hope to become the “one stop shop” resource for people engaging in this journey and lead people to the research and service agenda that continues to grow for this paradigm shift we are both reporting on and encouraging. Much of this work is international in nature, which highlights that a better idea cannot be kept down anywhere.

In the web resources I review recent research from Australia, China, Austria and the USA that covers psychosocial work, fish oil (omega-3), medications, cognitive enhancement therapy and creative models of care and service delivery. The topic of psychosis is being looked at from every angle and the information may help to inform you about what is right for you as you face this challenge.

We began by developing and then opening an electronic survey on www.nami.org and received input from over 1,200 people who had experienced psychosis and looked back on what they needed at the time of their first episode. We also received over 2,800 responses from family and other loved ones who shared their experience from their perspective.

Respondents to the survey tell a tale of confusion, isolation and anxiety, but also of the need to support each other and to give back. As one family member said, “It’s the most soul-wrenching experience anyone can go through. Use every resource to get through it and then turn around to help those coming up the mountain after you. They need your help.”

NAMI is a remarkable community and this is but one example of our strength and compassion. It is important to pass along the knowledge that one gains to the individuals travelling the same road. Hearing just one person, just one voice of support and compassion can help ease the struggle of the journey.

NAMI welcomes your feedback on these materials. To send feedback, email info@nami.org.