NAMI MISSOURIMissouri’s Alliance on Mental Illness

Support Education Advocacy Research

Winter 2010

NAMI Missouri3405 W. Truman Blvd., Suite 102

Jefferson City, MO 65109Office: (573) 634-7727

(800) 374-2138

Threats to Medicaid A Thorny Issue in

2011 Legislative Session

NAMI members remember the devastating cuts to Medicaid in 2005. An estimated 100,000 individuals either lost their health coverage entirely or were required to “spend down” each month to prevent losing it. Due to huge budget shortfalls, 2011 may be even more harsh for this vulnerable population.

Lobbyists hired by managed care companies have been meeting with legislators to promote a plan to put the “blind, elderly and disabled” with Medicaid under managed care. NAMI opposes managed care for those who are vulnerable and have multiple health care needs. In an effort to protect Missouri’s consumers, NAMI Missouri’s director Cindi Keele and representatives from the MO Federation of Advocates for Substance Abuse and Mental Health Services met with Governor Jay Nixon’s staff in early December. During his campaign the governor promised members of the MO Mental Health Commission that he would not force managed care on disabled Medicaid recipients.

While this promise will be hard to keep, there is a strong case for not doing this. A report authored by Joel Ferber and James Frost of Legal Services of Eastern Missouri entitled “Expanding Medicaid Managed Care to People With Disabilities and Seniors Would be Risky and Unwise” was released in August, 2010. In it Ferber and Frost examined other state’s experiences and Missouri’s Medicaid history. They concluded:

• Developing provider networks to meet the special needs of persons with disabilities and seniors would be challenging. This is particularly true for persons with mental health needs and those needing durable medical equipment and supplies.

• There would be a significant risk of under-service. Given the complex medical needs of this population, the only way to guarantee cost savings for the state is to set capitation rates too low and/or for plans to deny medically necessary care.

Missouri Medicaid currently enrolls children and parents, a young and relatively healthy population, in managed care plans. Reports show our state’s health outcomes for this group are below the national average. Some question the wisdom of expanding managed care further when we have yet to get it right with the current population.

Continued on page 2

Board of DirectorsTim C. Harlan - President

Ken Jones - First Vice PresidentCinda Holloway - Second Vice President

Dora Cole - SecretaryEric Pahl - Treasurer

Members At LargeLes Joslyn • Mike Jones, Ph.D.

David Lackey • Wanda Smith • Dennis FoglemanKevin Haggerty • Virginia Hess

Nominating Committee

TBA

Full Time StaffCindi Keele

Executive Director

Sherry FischerDirector of Operations

Ruth ThompsonParent Education & Support Coordinator

Part Time StaffSonya Baumgartner

Membership Services & FTF Coordinator

Alice J. KliethermesDirector of Consumer Services

Jennifer HudsonCommunity Outreach Provider Ed. Coordinator

Sharon GronerOffice Support Specialist

Barbara FrenchOutreach Specialist

Karren JonesOffice Support Volunteer

AffiliatesNAMIGreaterKansasCity•NAMIJeffersonCity

NAMIColumbia•NAMIJoplinNAMISouthwestMissouri•NAMISt.LouisNAMICentralOzarks•NAMIMoberly

NAMICapeGirardeau•NAMISoutheastMissouriNAMILakeOzark•NAMIBoonville

Emerging Affiliates: Marshall & Mexico

All NAMI affiliates have support groups.Support groups also meet in Branson & Mexico.

Part Time WARMline RespondersRita Owens • Sharon Groner • Randall Evers

Karren Jones • Barbara French • Ruth Thompson

NAMI Missouri is the chartered state organizationof the National Alliance on Mental Illness

IN THE KNOW

Access to doctors, especially in rural Missouri, has been a persistent problem. A USA Today story chronicled the experience of a 7 year-old in Sedalia whose tonsils needed to be removed. He had to wait. Eventually the managed care company got him an appointment, but with a doctor nearly two hours away.

Our state does not survey recipients to make sure they have timely access to doctors and Missouri Medicaid officials admit they don’t have funding to call the health plan’s doctors to make sure they are actually taking Medicaid patients. Outdated health care provider lists containing doctors that quit taking Medicaid or have closed their offices or are deceased has long been a complaint among Missouri Medicaid recipients.

This is an issue NAMI is following very closely. We are grateful to have the Federation of Advocates, the Disability Coalition on Health Care Reform as allies. There is much work to be done. Have you spoken to your elected official about this?

Threats to Medicaid Continued

Pictured Left to RightFront Row: Connee Gorman, Ruth Thompson, Diane Curtis, Stacie Stevens, Barb FrenchBack Row: Nancy Strothman, Roberta Crowell, Katherine Green, Judy LaHay, Linda Steinger, Sharon Noel, Mary KelleyNot Pictured: Angie Wilka and Sharon Nachbar

NAMI Basics Teacher Training . . . Congratulations Graduates

IN THE KNOW

Evaluating Paranoid Thoughts

Paranoid thoughts are common and most people have experienced them at least once in their life. Gossip is rampant in schools and workplaces, and now on Internet sites like myspace and facebook. Its no wonder people become suspicious. But when does a normal response to stress or threats turn into unhealthy patterns of thinking for which someone should seek professional help?

According to the DSM IV, a paranoid person suspects, without sufficient basis, that others are exploiting, harming, or deceiving him or her. There is a preoccupation with unjustified doubts about the trustworthiness of friends or associates. He or she may often read hidden meaning or threatening meanings into benign remarks and events.

Paranoia often occurs in conjunction with mental disorders like schizophrenia and depression. “The most common co-occurring disorders are schizophrenia and schizoaffective disorder, according to Ken Duckworth, M.D., medical director for NAMI. “ Its not common for paranoia to simply exist by itself.”

Paranoia can manifest in varying degrees of severity and even the mildest forms can impact relationships, family, work and daily life. Rebecca Pike, a consumer who has suffered severe paranoia, describes her experience. “I would be driving in a car and I would believe that all the cars around me, coming towards me or in front of me, belonged to the FBI. It was very nerve-wracking and scary and so real.” For Ms. Pike, living with paranoia had has a negative impact on her ability to work. As a result she must live on a fixed income.

Nancy Kaser-Boyd, an associate clinical professor at the University of California-Los Angeles’ David Geffen School of Medicine has conducted research into causes. “Most medical professionals believe it is a combination of genetics and environment,” says Kaser-Boyd. “In clinical practice, it seems to me that many of the people I have evaluated who are paranoid had some kind of traumatic event happen in their life.”

Mehesh Menon, PhD., a clinical scientist at the Centre for Addiction and Mental health in Toronto, Ontario, has treated numerous individuals with paranoia. He suggests the beast can be tamed. He recommends looking at the belief or suspicion and carefully weighing the evidence for and against. While this is not easy, it may help the individual determine whether these thoughts have a basis in reality or are happening because he or she is anxious or stressed.

Another tactic is to speak to a trusted friend, relative or medical professional about these thoughts. “It can be helpful to talk it over with someone else because they may be able to offer an external perspective,” Menon comments. He goes on to warn that the person who is being trusted with this information try not to get upset and respect the leap of faiththe individual is taking.

Its important for family members of people with paranoia to seek support for themselves. “You can’t help your loved one without support, “ says Dr. Duckworth. “I always encourage families to join groups like the ones offered by NAMI and similar organizations because they will meet many people who are dealing with similar issues, and they can get support and ideas on how to approach the problem and make things better”.

Do You Know theSymptoms of Paranoia?• Intense and irrational mistrust or

suspicion of others

•Taking offense easily

•Difficulty with forgiveness

•Defensive attitude in response to imagined criticism

• Preoccupation with hidden motives

• Fear of being deceived or taken advantage of

•Reluctant to confide in others because of the belief that the information will be used maliciously

Source: DSM IV and nmha.org/go/paranoia Fact Sheet: Paranoia and Paranoid disorders, Mental Health America

Memorial TributeIn memory of

Cody Stretzby Tim and Linda Harlan

and his mother, Marla Stretz.

In loving memory of Ann Sheehan

by Bettye J. Siebels.

In memory of Jonathan Neil Hansen

by his sister, Sue Hansen and Aaron Wachholz.

Donation made to the NAMI MO lending library fund.

In memory of Mrs. Marie H. Richey by Barb and Bob Bloomfield .

In loving memory of Darrell Bryant Loftin

by Mr. and Mrs. Van A. Heady, Connie Bagshawn and Mary Fowler.

Memorials dedicated to NAMI Missouri’s suicide prevention programs.

In memory of James Monroe McIlwain

by Mark Q. Johnson and Cindi Keele Johnson.

IN REMEMBRANCE

Congrats to New Family-to-Family Teachers!Fifteen NAMI volunteers received their credential to teach the Family-to-Family course in Fall, 2010. Their trainers were Dennis Fogleman and Leslie Joslyn (both NAMi MO Board members). Our new FTF teachers are: Jen Boyden, Bonnie Crandall, Laura Denkler, Peggy Englehardt, Connee Gorman, Kathryn Green, Kathleen Hawkins, Karen Hicks, Linda Hughes, John Orear, Dawnda Pentlin, Peggy Sargeant, Jane Templemire,Jan Thouvenot, Tony Vogel. These new teachers will be teaching in Kansas City, St. Chalres, Fenton, Jefferson City, Willard/ Springfield area, O’ Fallon and Belton, MO.

Kudos to New Support Groups Facilitators for Family Members!Families will need NAMI more than ever before in 2011! We want to recognize the NAMI volunteers who stepped forward to receive intensive training this Fall to become certified as NAMI family support group facilitators. Special thanks goes to Mike Jones, Ph. D. master trainer (and NAMI MO board member) who, with an out of state trainer, credentialed eleven new facilitators. They are: Jennifer Gibson, Linda Hughes, David Lackey, Diane Lacy, Felice McDaniel, Leland Perry, Ethel Wesson, Renee Yeager, Donna Youngblood, Heather Harlan and Steve Kreyling. These facilitators will help families in Columbia, Mexico, Clayton, Willard, Jefferson City, Kansas City, Rolla, Exeter and Fulton.

Thank You Ken and Bev!A special thanks goes out to Ken and Bev Jones who won the money raffle at our annual conference and donated it NAMI MO. This was done in tribute to their talented daughter Stephanie Jones, who also donated art to our silent auction.

Upcoming Volunteer TrainingsNAMI Missouri covers 100% of the cost for volunteer training and program materials for member volunteers to conduct NAMI’s signature programs in their communities. This represents a dollar value of $320 - $600 per person, depending on the training. All trainings are held in Jefferson City. Contact your local affiliate or call 1 800 374-2138 for more information.

NAMI MO Grassroots Advocacy TrainingLearn skills for engaging those who make decisions that affect the lives of persons with mental health needs and their families. Advocacy 101 training on January 18 and breakfast at the Capitol on January 19, 2011.

NAMI Connection Recovery Support Group Facilitator TrainingLearn skills needed to facilitate an effective consumer support group. To qualify you must be a consumer of mental health services and have at least one facilitation partner. June 10- 12, 2011.

In Our Own Voice Presenter TrainingLearn how to replace stigma with understanding and acceptance. Share your lived experiences and hope and drams as an IOOV presenter. Must be a consumer of mental health services and have a presentation partner to apply. April 15 –16. 2011.

Family-to-Family Course Teacher TrainingBecome a weapon of mass instruction for family members. Teach NAMI’s life changing 12-session course. No teaching experience necessary. Must be a family member and have a teaching partner to apply. A Spring/Summer date will be set.

Family Support Group Facilitator TrainingLearn skills needed to facilitate and effective support group for family members of persons with mental health needs. Must be a family member to apply. A Spring/Summer date will be set.

NAMI Basics Teacher TrainingHelp parents, foster parents and custodial relatives navigate the various child serving systems and cope. No teaching experience necessary. August 12 – 13, 2011.

IN THE KNOW

Family Intervention Associated With Fewer RelapsesA review published in the November, 2010 issue of the Cochrane Database of Systematic Reviews reports that family intervention for schizophrenia may be associated with fewer relapses and hospitalizations. NAMI’s Family-to-Family course and family support groups (though not specifically mentioned in the article) are examples of family interventions that improve family communication and reduce stress.

“People with schizophrenia from families that express high levels of criticism, hostility, or over involvement, have more frequent relapses that people with similar problems from families that tend to be less expressive of emotions,” write Fiona Pharoah, from Oxford and Buckingham Mental Health NHS Foundation Trust, United Kingdom and colleagues.

“Prevention of relapse is a cornerstone of psychiatric care,’ Dr. Pharoah stated in a news release. “If high quality family services are available, mental health professionals and managers may feel that family interventions are a worthwhile investment of time and effort for schizophrenic patients.”

We, at NAMI MO, find Dr. Pharoah’s statement about expressing emotions a tad misleading, as it seems to malign all expressed emotion. We are sure that is not the author’s intent. The report does not mean to say family members should be emotionless. In fact, our experience with consumers and family members tells us expressions of loving support, encouragement and acceptance have great value.

The report went on to say family intervention did not appear to either prevent or promote suicide, but it appeared to reduce the general social impairment and the levels of expressed emotion within the family. Again, she is referring to negative emotions like criticism or hostility.

The report concluded the effects of family intervention weren’t proven, but, “further data from already completed trials could greatly inform practice and more trials are justified as long as their participants, interventions and outcomes are applicable to routine care. “

CHILDREN

Helping Parents in Rural Missouri Don’t let anyone tell you can’t teach a NAMI Basics parent course in rural areas. My name is Barbara French and my affiliate is NAMI Central Ozarks. The name gives it away, we are nestled in the beautiful Ozarks mountains of Missouri. Our area is composed of many small towns and cities that are at least 25 miles from one another, separated by farmland.

My affiliate has been in existence for 14 years and I have taught all of the NAMI signature education programs at one time or another starting with Family-to-Family.

My granddaughter was 2 when she came to live with me. At 14 her behavior changed. My husband and I became less and less her family as she turned to peers at school, many of which had big problems.

Her behavior included not coming home at night and constant arguments. I lost my job going back and forth to school trying to intervene. We were mystified. Something was very wrong and we felt very alone. There was no information, education or support available to us.

Eventually, my husband and I had no choice but to put her in a residential home. It broke our hearts. Seeking answers, help and relief from my grief, I joined NAMI.

At first I taught the NAMI Family-to-Family course and another parenting program. Then, thanks to some start up funding from the Missouri Department of Mental Health, the six-session NAMI Basics Course came to Missouri. NAMI National’s course developer Teri Brister trained 18 teachers (including me) in Jefferson City on a hot August weekend in 2009.

My first course was co-sponsored by the Community Service Department at the Fort Leonard Wood Military Base. Cinda Holloway served as my co-teacher. Two more courses for the Central Ozarks area followed.

We got the word out in a number of ways; paid ads in newspapers, radio public services announcements, news releases, our listserve of folks interested in kid’s issues, letters and brochures to mental health centers. The state foster care authority helped by circulating class info to foster parents.

Promoting a new course that people were not familiar with was slow going at first, but our first graduates became out best public relations people. Word spread and classes began to fill.

In our first year 11 courses, graduating 104 parents, foster parents and custodial relatives were taught throughout Missouri. Most of these courses were taught in rural areas. Ruth Thompson, our NAMI MO Parent Education & Support Coordinator and I traveled and brought the course to two high need, rural communities (Marshall and Moberly). A small grant from Lilly made this possible. At Summer’s end my co-teacher Lisa Lewis and I traveled to Farmington and taught a course there.

Several graduates from these courses stepped forward to be trained as teachers, so the cycle begins again. Fourteen moms were trained in September.

Now comes the thorny issue of funding. Without additional support, we will be unable to sustain the success our volunteers built. The Mo Department of Mental Health is helping, but barely covers ¼ of the cost. No donation is too small. Can you help? Contributions are tax deductible and a donation envelope is enclosed in this newsletter.

Upcoming NAMI Basics Courses for Parents

NAMI Basics is NAMI’s six-session signature course to address the needs of parents, foster parents and custodial relatives of children and adolescents with mental health needs. This is an evidence-based course, taught by experienced parents and other caregivers. It is supported in part by the Missouri Department of Mental Health and the Missouri Foundation for Health. Call (800) 374-2138 for more information.

• St.CharlesCounty/St.Louis January 4, 2011

• Festus,UnionandCapeGirardeau March, 2011

• Joplin March 3, 2011

• LakeOzark Spring, 2011

Brain Maturity May Lag in Kids with ADHDAttention Deficit/Hyperactivity Disorder is the most common childhood mental disorder in America – affecting one in every twenty children. Since it was first described, there has been debate over whether ADHD is due to a delay in brain development or due to a complete departure from the pattern of brain development in children who do not have the disorder. Phillip Shaw, M.D. Ph.D., of the Child Psychiatry Branch of the National Institute of Mental Health has been studying this and other questions.

His study looked at cortex development, the brain’s outer crust or gray matter. They measured the thickness across the cortex across thousands of points in the brains of 446 children, half with ADHD and have without the disorder.

For kids with and without ADHD, the cortex starts off relatively thin, then gets thicker, and reaches peak thickness throughout adolescence. Those without ADHD reached a milestone of thickness at about age seven, children with ADHD reached this milestone later, around age ten. The delay was most marked in the frontal parts of the brain, the area which controls attention and action.

This finding provides some support for the idea that ADHD is associated with a delay in brain development. The finding does not, however, mean the brains of children with ADHD completely “normalize” by age ten, or that ADHD is temporary. Much of the delay found is carried forward into adolescence and other studies confirm there are many differences in brain structure and function in teens with ADHD. Thus, it is very important for children and teens to get the best possible treatment to ensure they have every opportunity to succeed in school and enjoy their lives with family and friends

CHILDREN

Does Your Legislator Know?• Fifty percent of lifetime mental illness

cases begin by age 14, 75% by the age of 24.

• Treating cases early could significantly reduce disability, before mental illnesses become more severe. The case for early assessment and treatment has never been stronger.

• One in 10 children lives with a serious mental or emotional disorder.

• Based on national prevalence estimates, more than 103,000 Missouri children and adolescents will suffer a serious mental disorder, yet very few will receive the treatment they need. While the number of Missouri parents seeking screening and treatment is steadily increasing, just 16,458 received services fro the Missouri Department of Health in 2008.

Please Remember NAMI MO in Your Holiday GivingNAMI Missouri is a precious resource for so many. In 2010, we increased programs and services to help more families and consumers. With charitable donations down, and are reserve funds low, we need your help! NAMI MO’s latest audit showed we put 94 cents of every donated dollar into education and direct services. Your donations:

• train peer facilitators for family support groups• train peer facilitators for NAMI Connection support and recovery groups• support Family-to-Family courses• support NAMI Basics parent courses• erase stigma with In Our Own Voice presentations• help consumers and family members in rural Missouri start new NAMI groups• support our 7-day a week consumer operated WARMline• publish our quarterly newsletter• fight for your interests at the state Capitol• pay the rent and utilities at 3405 West Truman Blvd., Suite 102• . . . and much,much more.

Please use the enclosed envelope to help if you can. No amount is too small. Thank you!

JOIN US!Every membership strengthens our effort. If you belong to a NAMI chapter, you are already a member of NAMI Missouri. If no chapter exists in your area, or you prefer to join independently, you may take out an at-large membership. All members receive the quarterly NAMI Missouri newsletter and the Advocate, the bi-monthly magazine of NAMI and other member benefits such as Affinity low cost long distance service and Advocacy Online (by request) and reduced NAMI Missouri Conference fees.

All Donations and Contributions are Tax Deductible

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3405 W. Truman Blvd., Suite 102Jefferson City, MO 65109

NAMI Missouri3405 W. Truman Blvd., Suite 102Jefferson City, MO 65109

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