NAMI Beginnings - Summer 2010

Summer 2010 ★ Issue 15

T h e Yo u t h Vo i c e ★ S t a t e a n d A f f i l i a t e N ew s ★ Fam i l y Vo i c e

A Publication Dedicated to the Young Minds of America from the NAMI Child & Adolescent Action Center

SensoryProcessingDisorderandADHD

Collaborative Problem Solving

Co-occurring Mental Health and Substance Use Disorders in Young Adults

2 | Nami Beginnings | Issue 15 | Summer 2010

C O N T E N T S

NAMI Beginnings is published quarterly by NAMI, 3803 N. Fairfax Dr.,Suite 100, Arlington, VA 22203-1701Ph: (703) 524-7600 Fax: (703) 524-9094

Michael Fitzpatrick, Executive DirectorDarcy E. Gruttadaro, J.D., Editor-in-ChiefDana C. Markey, Managing EditorCourtney Reyers, Copy EditorJoe Barsin, Art Director

Guest Contributors: Kay AshbyRoss Greene, Ph.D.Woody HawthorneCarol Kranowitz, M.A.Kenneth Minkoff, M.D.Jennifer K. RothmanAlex M. White

Staff Contributors:Darcy Gruttadaro and Dana MarkeyThe National Alliance on Mental Illness (NAMI) is thenation’s largest grassroots mental health organization dedicated to improving the lives of individuals and familiesaffected by mental illness. NAMI has over 1,100 affiliatesin communities across the country that engage in advocacy,research, support, and education. Members of NAMI arefamilies, friends, and people living with mental illnessessuch as major depression, schizophrenia, bipolar disorder,obsessive-compulsive disorder (OCD), panic disorder,post-traumatic stress disorder (PTSD), and borderline personality disorder.

NAMI website: www.nami.orgNAMI HelpLine: 1 (800) 950-6264

© 2010 by National Alliance on Mental Illness. All rights reserved

P O L I C Y A L E R T S

n March 23, 2010, PresidentObama signed into law The Patient Protection and Affordable Care Act,comprehensive health

reform legislation.The new law includes many provi-

sions that will benefit children, youthand their families by improving accessto coverage and the quality of healthcare, including the following:• Requires health insurance coverage

for all. Beginning Jan. 1, 2014, the law requires all Americans topurchase health insurance.

• Creates a national high risk pool. Establishes a temporary high-riskinsurance pool program for individ-uals with a pre-existing conditionand those who have lacked insurancecoverage for at least six months.This begins 90 days after enactmentof the law and ends on Jan. 1, 2014.

• Creates insurance exchanges.By 2014, states must establish state-based insurance exchangesthat allow individuals and smallbusinesses to purchase affordableinsurance coverage. Income taxcredits will be available for familieswith incomes less than 400 percentof the federal poverty level to purchase insurance coverage. Thelaw requires all health plans in theexchange to offer mental health and addiction services.

• Expands Medicaid. In 2014, the law expands Medicaid to all individuals under the age of 65 with incomes up to 133 percent of the federal poverty level.

• Extends CHIP. Preserves and extends the Children’s HealthInsurance Program (CHIP) through

Sept. 30, 2019. CHIP helps toensure that low-income childrenreceive health care coverage.

• Prohibits pre-existing condition exclusions. Insurers are prohibitedfrom denying insurance coverage to individuals with pre-existing conditions. Any individual deniedcoverage because of a pre-existinghealth condition will be eligible forassistance through the national highrisk pool until Jan. 1, 2014 at whichtime insurers are prohibited fromusing pre-existing conditions todeny health coverage to individuals.

• Extends coverage for young adults on their parents’ plans. Beginningsix months after enactment (Sept. 23,2010), insurers must allow youngadults to remain on their parents’insurance plans through age 26.

• Applies mental health parity. The federal mental health parity law protection applies to all health plans purchased through insuranceexchanges and all private healthinsurance plans.

• Prohibits lifetime and annual limits on benefits. Beginning sixmonths after enactment, insurersare prohibited from setting lifetimelimits on benefits for individual and group health plans. BeginningJan. 1, 2014, insurers are prohibited from setting annual limits on benefits for individual and group plans.

• Extends Medicaid for foster youth. Beginning in 2014, the law extendsMedicaid coverage to all youth upto age 25 who were previously infoster care for a minimum of sixmonths.

2 POLICY ALERTSCapitol Hill and State House Watch

3 Collaborative Problem Solving

5 Two “Look-alikes:” Sensory Processing Disorder and Attention Deficit/Hyperactivity Disorder

7 FAMILY VOICE

8 YOUTH VOICE

10 ASK THE DOCTOR

13 STATE NEWS

14 AFFILIATE NEWS

15 BOOK REVIEW

Capitol Hill andState House Watchby Darcy Gruttadaro, J.D., director, NAMI Child and Adolescent Action Center

Federal Health Reform: What Does It Mean for Children and Youth Living with Mental HealthConditions?

O

continued on page 4

F E A T U R E

Summer 2010 | Issue 15 | Nami Beginnings | 3

Collaborative Problem Solvingby Ross Greene, Ph.D., author of The Explosive Child and Lost at School and associate clinical professor, Department of Psychiatry, Harvard Medical School

Why do some childrenhave significant behav-ioral challenges whileothers do not? Researchover the past 30 yearsprovides some clearanswers. There is a compelling body ofresearch indicating that

behaviorally challenging children arelacking crucial cognitive skills, espe-cially in the general domains of flexi-bility/adaptability, frustration toleranceand problem-solving. While much ofthis research has been conducted on children categorized by specific diag-noses—such as attention deficit/hyper-activity disorder (ADHD), oppositionaldefiant disorder (ODD), conduct disor-der (CD), nonverbal learning disability(NLD), autism spectrum disorders(such as Asperger’s disorder) and moodand anxiety disorders—it is the laggingskills, rather than the disorders, thathelp you understand why a child isbehaviorally challenging.

For example, while it may be usefulin some ways to know that a child hasbeen diagnosed with ADHD—especiallyif you are hoping people will take thechild’s difficulties seriously—it is evenmore informative to know that a childlacks the skills to:• shift efficiently from one mindset or

task to another;• do things in a logical sequence or

prescribed order;• persist on challenging or tedious

tasks;• reflect on multiple thoughts or ideas

simultaneously;• maintain focus;• consider the likely outcomes or

consequences of his actions; and• consider a range of solutions to a

problem.

It is not hard to imagine how theselagging skills may set the stage forchallenging behavior. Of course, theselagging skills can be found in childrenwho carry diagnoses other than ADHD

as well as in children who carry nodiagnosis at all.

Similarly, while it could be helpfulto know that a child meets the diagnosticcriteria for Asperger’s disorder or NLD,it is likely to be far more informative toknow that the child is a very concrete,literal, black-and-white thinker andlacks the skills to: • handle unpredictability, ambiguity,

uncertainty or novelty;• deviate from rules and routines;• shift from his or her original idea,

plan or solution;• take into account situational factors

that would suggest the need toadjust a plan of action;

• attend to or accurately interpret social cues and social nuances;

• appreciate how his or her behavior is affecting other people;

• appreciate how he or she is coming across or being perceived by others;and

• appreciate another person’s perspective or point-of-view.

Once again, it is these lagging skills that set the stage for challengingbehavior in the children who lackthem. And, again, these difficulties canbe found in children who carry diag-noses other than Asperger’s disorder orNLD, as well as in children who carryno diagnosis at all.

In sum, the research of the past 30 or more years has helped us under-stand that children are challengingbecause they are lacking the skills not to be challenging. In other words, challenging behavior represents a formof developmental delay. Of course, the fact that behaviorally challengingchildren are lacking crucial cognitiveskills could lead to the assumption that lagging skills are the only factorcontributing to challenging behavior.However, challenging behavior doesnot occur in a vacuum. It occurs whenthe cognitive demands being placedupon a person exceed that person’scapacity to respond adaptively. This

definition of challenging behaviorapplies not only to challenging children—it applies to all of us. Inother words, challenging children arenot terribly different from the rest ofus. However, because they are lackingsome crucial skills, they may be behav-iorally challenging more easily, moreoften and in ways that are more extremethan those who are not lacking theseskills.

The circumstances or situations inwhich the cognitive demands beingplaced upon a child exceed his or hercapacity to respond adaptively arecalled unsolved problems. Fortunately,each challenging child has an identifi-able and predictable set of unsolvedproblems. For example, if a particularhomework assignment requires skillsthat a particular child is lacking and,therefore, increases the likelihood of challenging behavior, then thathomework assignment is an unsolvedproblem. Other common home-basedunsolved problems, include:• completing chores;• the amount of time a child is

spending in front of a TV or com-puter screen;

• what or how much a child is eating;• brushing teeth;• adhering to curfew; and • more.

The goal of interventions is to solve these problems. Once they aresolved, they will not continue to causechallenging behaviors.

This, of course, leads us to an interesting question: has our improvedunderstanding of the factors contribut-ing to children’s challenging behaviorschanged how we try to help them? Theanswer: not as much as you may think.In many settings—homes, schools,inpatient psychiatry units, residentialfacilities, detention settings—the primaryway in which the problems giving riseto challenging behaviors are solved isthrough unilateral problem solving,

Dr. RossGreene

continued on page 4

• Prohibits dropping insurance coverage when people get sick.Beginning six months after enactment,insurance companies are prohibitedfrom withdrawing coverage when a person gets sick as a way of avoiding covering the costs of theperson’s health care needs.

This is by no means an exhaustivelist of the provisions that are includedin the recently enacted federal healthreform law. The law includes manyother provisions. NAMI continues todevelop tools related to the implemen-tation of the law and the interplaybetween this law and the federal mental health parity legislation. Stay tuned for updates and alerts!

State Advocacy 2010 In light of the budget crises in nearlyevery state, NAMI recently added anew State Advocacy 2010 section to the NAMI website. It includes tools,resources and advocacy materials thatcan be used to oppose proposed budgetcuts to mental health services and supports and to build an effective advocacy agenda.

All too often, the mental health andsocial service systems are the first onthe chopping block when governorsand local community leaders are forcedto cut budgets. It is critical that advo-cates speak up for children, youth andyoung adults living with mental healthconditions to take funding services for this population off the choppingblock. Those causes with the loudestprotectors are often the last to be cut!It is our hope that the new StateAdvocacy 2010 section of the NAMIwebsite will help support your work as we raise our collective voices. To access this new website, visitwww.nami.org/stateadvocacy.

F E A T U R E


usually in the form of imposition of adultwill often accompanied by incentives.

My experience is that unilateralproblem-solving actually heightens thelikelihood of challenging behavior inmany children. That is because havingwill imposed upon you—somethingwhich most people are not all thatenthusiastic about—requires skillsbehaviorally challenging children areoften lacking. Experience also tells methat adding rewards (for complyingwith adult will) and punishment (forfailing to do so) to the mix only addsfuel to the fire. Moreover, unilateralproblem-solving does not solve anyproblems durably and does not teachbehaviorally challenging children theskills they are lacking.

That is why I developed a model ofcare called the Collaborative ProblemSolving (CPS) approach as described inmy first book, The Explosive Child, andagain in my most recent book, Lost at School. CPS consists of three basicingredients:• First involves gathering information

from a child to achieve the clearestpossible understanding of his or herconcern or perspective on a givenunsolved problem;

• Second involves entering the adult’s concern or perspective into consid-eration; and

• Third involves the child and adult

brainstorming to achieve a solutionthat is realistic and mutually satis-factory.

When the ingredients of the CPSapproach are applied—preferablyproactively—to the unsolved problemsthat are reliably and predictably precip-itating challenging behaviors, the prob-lems are durably solved, the likelihoodof challenging behavior is reduced andthe skills are taught. And what if thechild’s adult caretakers are lackingsome skills, too? They will learn thoseskills the same way, by solving problemscollaboratively.

Published research on the effective-ness of the CPS approach in both out-patient and inpatient settings indicatesthat the model is quite effective. Papersdocumenting the effectiveness of themodel in schools and juvenile deten-tion facilities are forthcoming.

The biggest downside to the CPSapproach is that it is new for a lot ofpeople, so it can be hard to do, at leastinitially. In an effort to make theapproach as accessible as possible toparents, educators, mental health clini-cians and staff in therapeutic facilities,I have founded a new non-profit organ-ization called Lives in the Balance. Visit the Lives in the Balance website at www.livesinthebalance.org to learnmore about and access resources on theCPS approach.

continued from page 2 continued from page 3

The NAMI Basics education programprovides parents and other family care-givers of children and adolescents livingwith mental illness with the informationand support they need to make the best

decisions possible for their children,families and themselves and to copeeffectively with their situation. To learnmore about NAMI Basics, visit the NAMIBasics website at www.nami.org/basics.

NAMI Basics Education ProgramThe Fundamentals of Caring for You, Your Family and Your Child Living with Mental Illness

States Currently offering NAMI BasicsAlabama Maryland North CarolinaArizona Massachusetts OklahomaArkansas Michigan South CarolinaCalifornia Mississippi TennesseeConnecticut Missouri UtahFlorida Montana VirginiaIllinois Nebraska WashingtonIndiana New Jersey WisconsinLouisiana New York

States to be trained in 2010OregonPennsylvania

States allowing affiliates to provideNAMI BasicsOhioTexas

Picture Brian. While theother children are settlingdown to a workbook task,Brian rocks in his seat,whining, “Owwuu,” andrubs his arm where aclassmate grazed him en route to her chair.Abruptly, he stands andshoves his desk away

from passing children. The teacher frowns and says,

“Sit down, stay put and start working,Brian!” He wriggles in his seat and asks,

“Um, what are we supposed to do?”The teacher replies, “Pay attention!

Page 36, even-numbered questions.” He gropes inside his messy desk,

finally locates the workbook and drops it.Retrieving it, he sags to the floor. Heplops into the chair again, grips a pencillike a dagger and starts writing—butpresses so hard that the point breaks. He hurls the pencil across the room andscreams, “I hate this!”

Brian is inattentive, impulsive andfidgety. Does he have attentiondeficit/hyperactivity disorder (ADHD)or sensory processing disorder (SPD)?Recognizing the differences betweenthese two disorders and providingappropriate treatment can greatly benefit children and adults like Brian.

Like ADHD, SPD is a neurologicalproblem affecting behavior and learn-ing. Unlike ADHD, SPD is best treatedwith occupational therapy using a sensory integration framework. Thistherapy addresses underlying difficul-ties in processing sensations that causeinattention and hyperactivity.

In The Out-of-Sync Child, I defineSPD as the “difficulty in how the braintakes in, organizes and uses sensoryinformation, causing a person to have

problems interacting effectively in the everyday environment.” Sensorystimulation—too much, too little orthe wrong kind—may cause poormotor coordination, incessant move-ment, attention problems and impul-sive behavior as the child strives to get less—or more—sensory input.

Brian’s central nervous system inefficiently processes tactile sensa-tions. The slightest touch overwhelmshim. As a “sensory avoider,” he is over-responsive and cannot regulate, or

“modulate,” sensory input. Also, touchstimulation confuses him. As a “senso-ry jumbler,” Brian cannot discriminatedifferences among sensations.

How does his SPD play out? Briancannot interpret how objects feel whenthey contact his skin. His chair, deskcontents, workbook, pencil and classmates bother or befuddle him.Fidgeting and squirming, he pays a lotof attention to averting ordinary tactilesensations. Meanwhile, he pays scantattention to the teacher’s words orclassroom rules. Imagine Dana, a child who processes

movement and balance sensations veryslowly. This under-responsive child, or “sensory disregarder,” has difficultystarting or stopping an activity. Withencouragement, she eventually settlesinto a swing, enjoying the movement thathelps her nervous system get organized.However, Dana does not know when tostop. She swings and swings, inattentive

to her own body-centered sensationsscreaming, “Enough!” Envision Jayson, a “sensory craver”

who needs much more action than hispeers. An impulsive “bumper and crasher,”he seeks intense, vigorous movement.Constantly, he rocks, climbs, gets upside-down and gyrates, darting from one experience to another. He pays muchattention to satisfying his craving formovement and little attention to hismother’s instructions or where he left his shoes.

Inattention, impulsivity, fidgetiness,constant movement—these are definitelysymptoms of SPD.

Now consider this definition forADHD: a “neurological syndrome characterized by serious and persistentinattention and impulsivity. When con-stant, fidgety movement (hyperactivity)is an additional characteristic, the syn-drome is called ADHD.”

Inattention, impulsivity, fidgetiness,constant movement—these are definitelysymptoms of ADHD.

SPD and ADHD are certainly “look-alikes.” However, they are distinct disorders, and optimum treatment forthe two problems is very different.Before jumping to conclusions, profes-sionals, parents and teachers shouldconsider the whole child to thoughtfullydetermine the best support.

If the child is frequently, but notalways, inattentive, it is useful to


F E A T U R E

Two “Look-alikes:” SensoryProcessing Disorder and AttentionDeficit/Hyperactivity Disorderby Carol Kranowitz, M.A., author of The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder

CarolKranowitz,

M.A.

continued on page 6

Before jumping to conclusions, professionals,

parents and teachers should consider the whole

child to thoughtfully determine the best support.

observe his or her behavior and ask:Where, when and how often does hisor her inattention occur? What is happening, or not happening, when he or she concentrates well? What ishis or her “self-therapy?”

When overloaded, an over-responsivechild needs less stimulation. How canwe help? We can undo something!Over-the-counter first aid for this childmay be decreasing the offending sensa-tions. We can make his or her environ-ment softer, dimmer, quieter and calmer.

Then, we can do something!Comfort the child with “deep pressure”such as a massage or bear hug. Create aretreat under the dining room table orin a classroom corner with pillows anda sleeping bag to burrow into. Applydeep pressure on skin and muscles toget the child organized and ready toparticipate and learn. Provide heavy-work activities, including pushing agrocery cart, pulling a wagon, liftingweights or carrying a book carton.Ensure daily outdoor play (movementalways helps, so the more recess, thebetter). Jog together around the block

or playground. Offer opportunities forgentle roughhousing. Give the child arolling pin for pressing dough, a shovelfor digging, a bar for chinning, a ham-mock for swaying, a wad of gum forchewing or a trampoline for jumping.

When “underloaded,” an under-responsive or sensory-seeking childneeds extra sensory stimulation. Again,we can do something! Provide sensory-motor experiences like those men-tioned above. The under-responsive or seeking child needs them, too, invarying degrees. Similar activities maycalm one type of child and invigorateor satisfy another.

Providing just the right sensory-motor input will certainly help a childwith SPD. No surprise, sensory-motorinput will also help the child withADHD. Indeed, it will help everyone,because we all require frequent, dailysensory-motor experiences.

A sensory diet may be the best“medicine” for the child experiencingattention problems as a result of SPD.An occupational therapist can developan individualized sensory diet withappropriate touch and movement

experiences. An approach that excludesmedications and includes movement,deep pressure and heavy work neverhurts and often helps the inattentivechild whose problem is not ADHD but developmentally delayed sensoryprocessing.

To learn more about SPD, contact Carol Kranowitz, M.A., [email protected].

Suggested Reading:Ayres, A.J., Ph.D. (2005). Sensory Integration and the Child: Understanding Hidden Sensory Challenges. Los Angeles: Western PsychologicalServices.

Biel, L., & Peske, N. (2005). Raising aSensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory IntegrationIssues. New York: Penguin.

Kranowitz, C. (2005). The Out-of-SyncChild: Recognizing and Coping with SensoryProcessing Disorder. New York: Perigee.

Kranowitz, C. (2006). The Out-of-Sync Child Has Fun: Activities for Kids with SensoryProcessing Disorder. New York: Perigee.

Kranowitz, C., & Newman, J. (2010).Growing an In-Sync Child. New York: Perigee.

Miller, L.J., Ph.D., with Fuller, D.A. (2006).Sensational Kids: Hope and Help for Children withSensory Processing Disorder. New York: Putnam.

Smith, K.A., Ph.D., & Gouze, K.R., Ph.D.(2004). The Sensory-Sensitive Child: Practical Solutions for Out-of-Bounds Behavior. New York:Harper Collins.


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continued from page 5

NAMI’s Child and AdolescentAction Center and CrisisIntervention Team (CIT)Technical Assistance Centerhave combined forces to workon a national initiative to promote programs adaptedfrom the adult CIT model

that are designed to respond to youth in psychiatric crisis in both school and community settings.

The CIT model is designed to address the influx of individuals with mental illness in the criminal justice system by creating collaborations between law enforcement,mental health service providers and families. Law enforce-ment officers receive specialized training and respond whenindividuals with mental illness are experiencing a psychi-atric crisis, diverting them to appropriate mental healthservices and supports rather than to the criminal justicesystem.

As part of NAMI’s initiative on CIT for Youth, NAMI held

a focus group in Lake Charles, La. with approximately 30 school resource officers (SROs), SRO supervisors and related personnel who had previously received CIT trainingwith a focus on youth. The SROs who participated in the focus group provided comments on the training theyreceived and shared their thoughts on areas in which additional and more intensified training would be helpful as they addressed the needs of students with mental health needs.

NAMI developed a focus group report titled, AConversation with CIT Trained School Resource Officers,that outlines the valuable feedback, input and thoughts the SROs provided during this focus group. The report alsoincludes recommendations on topics that NAMI believesshould be covered in CIT for Youth training and changesthat should be made in schools and other child-serving systems to improve the school environment for SROs,school staff and all students, especially those living withmental health needs. To view the report, visit the Child andAdolescent Action Center website at www.nami.org/caac.

A Focus Group Report: A Conversation with CIT-trainedSchool Resource Officers

IntroductionAfter our 26-year-old son, Billy, arrivedhome with us in Merritt Island, Fla. inApril 2008, my wife and I were prayingthat the change in location would helpour son better cope with his attentiondeficit/hyperactivity disorder (ADHD)and bipolar disorder. I had just finisheddocumenting our story of a 10-yearbattle in Virginia with hisDextromethorphan (DXM) and alcoholaddictions and his mental health conditions in, Billy: One Family’s InsaneJourney through the Virginia MentalHealth System, and had convincedmyself that things certainly could notget any worse. After all, we were awayfrom the gloomy winter weather thathad contributed to his depression andalso away from mental health and legalsystems that did very little to help himcope with his mental health conditions.As we found out, that did not meanthat things would be necessarily gettingbetter.

Ever since I had moved the familyto Northern Virginia in 1995, my sonand wife, Janice, had been after me tomove back to Florida. Our son had avery active but normal childhood therefor the first 12 years of his life, andneither he nor my wife had reallyadjusted to the busy lifestyle ofSterling, Va. This is where the problemswith alcohol and DXM addictions,ADHD and bipolar disorder started taking hold of our son’s life and eachyear seemed to bring a new suite ofproblems. We had all hoped that moving back to Florida would give him a new start.

Billy had just finished serving a 14-month sentence in CharlotteCourthouse in Virginia for a hit-and-run charge in April 2008. The incidentwas precipitated by him taking one ofour cars and driving up to a shoppingcenter to get alcohol and hitting anoth-er car in the rear as he was making aturn. While in jail, Billy received no

mental health care and little exercisetime. His stay cost the state of Virginiamore than $50,000—money that, inour opinion, would have been muchbetter spent toward his long-term mental health care.

Crisis Intervention Team Officers Madethe DifferenceIn Florida, Billy returned to his addic-tions, which earned him several staysin a hospital. However, in Florida, getting him to the hospital was mucheasier because all the officers sent to help were Crisis Intervention Team(CIT) officers. CIT is a dynamic collaboration of law enforcement andcommunity agencies and organizationscommitted to ensuring that individualswith mental health conditions arereferred to appropriate mental healthservices and supports rather thanthrust into the criminal justice system.Instead of being treated as a wantedcriminal who needed to be thrown tothe ground and handcuffed, Billy wastreated quietly and with respect.

Most of the time, Billy was convincedto ride to the hospital willingly. He wastreated like a young man who neededhelp instead of like a dangerous criminal.

Wild RidesDuring our fresh start in Florida, Iasked Billy to come with me to a base-ball game in Tampa Bay, Fla. He wasmore than happy to go. We had been toTropicana Field before and thoroughlyenjoyed ourselves. This time, however,Billy became manic on our walk to thepark from our hotel, imagining that wewere going to be taking on gangstersand car thieves prowling in the neigh-borhoods nearby. The mood did notchange after the game ended, after Iwent to sleep, Billy met a gangster andtook my car through the mean streetsof Tampa, witnessing drug and prosti-tution deals. At one time while drivingthrough the worst neighborhoods, he

had a gun to his head. He told me laterhe was feeling invincible and like hewas living a video game. Luckily, I hadwoken up at 4 a.m. and saw the carwas stolen. We tracked his where-abouts to a Walmart, where he tried toget cash, and sent the police over toapprehend him and his gangster friend.The gangster was released, but Billywas taken to a Tampa mental hospitalwhere he remained for nine days. That was the last time we went to aballgame of any kind.

Following this incident, thingscalmed down somewhat. He found anew girlfriend in December 2008 andstarted college at Everest University.When things seemed to be going well,he slipped back to abusing alcohol andwas arrested at our home for resistingarrest.

The judge in the case recognizedBilly’s mental health conditions andaddiction and allowed him to go to ahalfway house in Lake Park, Fla. This,unfortunately, turned out to be a badmistake. Unlike a rehabilitation facility,this halfway house was accountable tono one and Billy was given almostcomplete freedom. To our horror,addicts were actively shooting up andusing in the house. The final strawcame when actively using roommatesstole much of his property and offeredhim money for his prescription medi-cine, only to steal it from him laterwhen he refused to sell it. When Billygot angry because of all the thefts andthe complacency of the program direc-tor, he was dismissed from the programand dropped off at a Lake Park street.Billy is now returning to a more tradi-tional program with the support of thecourts and we all are expecting him todo well there.

AccomplishmentsAlthough Billy’s struggles are not over,he has made some major strides in


F A M I L Y V O I C E

After Virginia: Billy Inches TowardNormalcyby Woody Hawthorne, parent and author of Billy: One Family’s Insane Journey through the Virginia Mental Health System

continued on page 8

conquering his conditions. In May2009, he completed a motorcycle safetycourse and obtained a Florida motorcyclelicense. This required him to overcomehis fear of tests and many roadblocksthat related back to his hit-and-runaccident in Virginia. In July 2008, heaced his first college course in psychol-ogy at Everest University. With that, hebecame the first child in our family toget college credit—something he can

now brag about to his two older brothers and sister. Not bad for someone whose probation officers inVirginia told me to abandon him in the streets to see if he would “sink or swim.”

Moving Forward: One Step at a TimeWith time, comes some maturity anddetermination. Today with our support,Billy continues his battles, but now heis much more diligent about taking

his medication and staying away from DXM and alcohol. Billy plans toresume his studies at Everest andJanice and I are letting him move forward one step at a time. He is alsoplanning to write a book describingwhat it is was like to cope with addic-tion and mental health conditions, withthe hope of spreading some optimismto others with similar challenges.


F E A T U R E

Creativity and Overcoming Self Destruction by Alex M. White

T H E Y O U T H V O I C E

t all started in seventh grade. Ibegan to hear voices. At first Ithought it was just someone callingout my name, but as time went onthe voices grew stronger, louder

and increasingly self-destructive. Myauditory hallucinations were so severethat I could not fall asleep withoutheadphones on blasting music in anattempt to drown out the screams.Eventually the voices wore me downand convinced me to kill myself. Thatwas my first suicide attempt.

I was placed in a psychiatric hospitalfor two weeks. Initially, I was diag-nosed with schizophrenia because ofthe auditory hallucinations. At thetime, it was not widely recognized thatthis could be a symptom of adolescentbipolar disorder. I began taking anti-psychotic medication but after muchresearch, I decided to try to go off ofthem. I did okay for about one year. I got good grades in school, kept busywith sports, band and other activitiesand functioned as normally as anyyoung teenager. However, in the springof my freshman year, I was also diagnosed with a panic disorder andprescribed Paxil.

The Paxil ignited a severe manicepisode and I lost control. I could notcontain myself, could not sit still inclass and my teachers did not knowwhat was happening to me. Neither

did I. I could not keep track of mydosages and I accidently overdosed. I was hospitalized again, taken off ofPaxil and had a complete breakdown. I had severe withdrawals and did notmove for nearly two months. I lay inbed staring at the ceiling, barely eatingand not speaking to anyone for daysexcept for the occasional one-word verbal utterance to my father confirm-ing I was still alive. I was an emptyshell of a human being.

During this time, I was properlydiagnosed with bipolar disorder. Evenwith the proper diagnosis, the strugglehad just begun. Determining the rightcombination of the right doses of theright medications while I was goingthrough puberty was worse than tryingto shoot a moving target—it felt impos-sible. I eventually dropped out of highschool and was home schooled. Everysemester I would try to go back butcould not handle it. With the exceptionof a few close friends, I was completelyisolated. Suicide seemed like not mere-ly the only option, but the only way tofind relief from this unrelenting perpet-ual depression. I spent weeks planningwhat would be the least painful way toend my life. Two attempts and a hospi-talization later, I was still hopeless.

I began trying to write to get all ofthe dark, painful emotions out, but Icould never find the words that wouldexpress how I truly felt. On the outsideI looked physically healthy, yet on theinside my mind and spirit could not bein more pain or turmoil. This baffledthe people around me and I desperatelywanted to explain to them why I wasacting the way I was.

Around this time, I started lookingat films differently. I realized that theonly true escape I felt from whatseemed like perpetual misery and insta-bility was when I was watching a

I

Alex M. White

continued from page 7


T H E Y O U T H V O I C E

movie. I could put myself in thatworld. I would forget (or at least bedistracted from) my problems for ahour or two. It did not always happen,but what an experience that momen-tary escape offered when it did. Iremember one incident in particular,when after coming off of a prescribedanti-depressant medication, I did notsleep for four days straight. The severewithdrawals caused me to be awakeand conscious for over 90 hoursstraight. It was not until I put on amovie about an insomniac ambulancedriver that I was finally able to fallasleep.

With time, film became more than awindow of escape. Reception grew intocreation and filmmaking became anemotional outlet, a means of expres-sion. I found that my inability to writedown my feelings—the “verbal paraly-sis” that my illness caused—did notmean I could not be creative or expressmyself. What I lacked in words I made

up for in imagery: an ominous cloudformation, the cracks of a light bulb,an empty street at night or a seeminglybottomless pit. I could not explain howI felt, but if I was lucky I could com-pose a frame or take a photograph thatwould convey my feelings in a truersense than any combination andsequence of words I could draw up.

This “artistic therapy,” along with atherapist who believed in combiningtraditional and nontraditional treat-ments, began to help me regain controlof my life. By using a CranialElectrotherapy Stimulation device, Iwas able to reduce the doses of my pre-scriptions to a level that did not leaveme feeling like a zombie and unable tofunction. I was able to graduate fromhigh school in four years, something Inever thought I was going to be alivefor, much less have the chance to walkwith my graduating class.

Three-and-a-half years later, I grad-uated with honors from Montana State

University with a B.A. in film. I madean award-winning short film, UneVignette de Mélancolie, about mydepression and suicidal ideation thathas played internationally. There weremoments I did not think I would makeit, days I was tired of fighting andtimes when I wanted to give up. Butthrough the years, I have learned that Iwas more than “bipolar disorder.” I wasa human being with goals, hopes,dreams and a young man with the bestfriends and best family you could askfor—a filmmaker with a future.

Editor’s Note: Alex White is a memberof the young adult Expert AdvisoryGroup that worked with NAMI to createStrengthofUs.org, a social networkingwebsite for young adults living with amental health condition. Check it out atwww.strengthofus.org. We applaud Alexfor his tremendous accomplishments andfor his contribution to this new onlinecommunity.

n March 2010, NAMI launchedStrengthofUs.org, a new onlinecommunity for young adults livingwith mental health conditions.

Developed by young adults,StrengthofUs.org is a user-driven socialnetworking website where young adults can connect withpeers, provide support and share personal stories, creativityand helpful resources by creating profiles, writing andresponding to blog entries, instant messaging, posting on“The Wire,” engaging in discussion groups and sharingvideos, files, photos and other news.

The website also includes an online resource center thataddresses topics young adults identified as being criticallyimportant to them, including:• Healthy relationships; • Friends and family;• Campus life; • Independent living;• Finances; • Mental health services • Housing; and supports; and• Employment; • Much more.

For this project, NAMI conducted a national survey ofmore than 280 young adults in the 18-to-25-year-old agegroup on their social networking habits, resource prefer-

ences and support needs. The surveyreport became the blueprint forStrengthofUs.org. NAMI also worked inclose consultation with a young adultExpert Advisory Group. This group wasinvolved in all aspects of the develop-

ment of the website, including design, social networkingcomponents, content and other key features.

StrengthofUs.org was developed in light of the 2008report by the U.S. Government Accountability Office thathighlighted the lack of services and supports available tomeet the unique needs of young adults living with mentalhealth conditions. These young adults often straddle the child and adult mental health systems, with neithercompletely meeting their needs. NAMI was determined to meet young adults where they are, online, in the hopes of reaching those who are looking for information, peersupport and resources in their communities as they navigatethe unique challenges and opportunities of the transition-age years.

There are already more than 700 active users and lots of activity on the website. Encourage young adults to join the conversation and community by checking outwww.strengthofus.org today!

NAMI Launches Social Networking Website for Young Adults

I


A S K T H E D O C T O R

Co-occurring Mental Health andSubstance Use Disorders in YoungAdults: A Conversation with the Nation’s Leading Expertby Kenneth Minkoff, M.D., national leading expert on integrated treatment of individuals with co-occurring mental health and substance use disorders and clinical assistant professor, Department of Psychiatry, Harvard Medical School

1. When we talk about dual diagnosis,what does that mean?Dual diagnosis is a term that often hasmultiple meanings, which is one of thereasons it is beginning to be phasedout. In the past, dual diagnosis hasbeen used to refer to people who hadboth a mental health condition and asubstance use disorder, as well as topeople who had both a mental healthcondition and a developmental orintellectual disability. This can be confusing.

In addition, we are beginning tophase out the term “dual diagnosis”because many people do not want to belabeled by their “diagnosis” and manyseek help with multiple issues wellbefore any one knows whether theyhave a diagnosis or not. Further, we arerealizing that the majority of peoplewho are seeking services have multipleconditions, not just two, so the term“dual” can be misleading.

The newer terminology is the term“co-occurring disorders” or, even morerecently, “co-occurring conditions.”With regard to mental health and sub-stance use, I define the term as follows:Any person of any age who has any

combination of any mental health issueAND any substance use issue, includingtrauma, gambling and nicotine depend-ence, whether or not they have alreadybeen diagnosed.

In addition, we are increasinglyusing the term “people with co-occur-ring conditions” to reflect the expecta-tion that individuals will often haveissues that require attention and inter-vention including, mental health, sub-stance use, trauma, medical, housing,parenting, legal, disability, financial,cognitive learning and so on. In this

way, we are beginning to think abouthow to design services to reflect thecomplex needs of the people comingthrough our doors.

2. How often do young adults living witha mental health condition experience aco-occurring substance use disorder?How do co-occurring mental health andsubstance use disorders impact thelives of young adults? Even without accounting for nicotineor caffeine, co-occurring conditions are“an expectation” among individualswith serious mental health conditions.There are a number of epidemiologicstudies that indicate that approximately50 percent of adults with serious men-tal illness have a life time substanceuse disorder (abuse or dependence).

In studies looking at generally stable individuals in the community,about 25 to 30 percent have beenactively using in the last month,though some studies show that about75 to 80 percent of the individuals whohave any substance use issue will haveused in the last year. These figures forcurrent active use are higher amongyounger adults and even higher, usuallyin the range of 60 to 80 percentdepending on the community, foryounger individuals who are in crisis,in acute hospital settings, in troublewith the law or homeless.

As can be seen from the aboveinformation, substance use issues areassociated with generally poorer out-comes in the lives of young adults whohave serious mental health conditions.These individuals are more likely to: • Relapse and be re-hospitalized;• Be labeled as “treatment resistant

and non-compliant;”

• Engage in self-destructive, suicidal or violent behavior;

• Have co-occurring health issues of all kinds (including Hepatitis C andHIV);

• Become homeless;• Get in trouble with the law;• Have difficulty with parenting and

child welfare; • Have financial issues; and • Most painfully, young adults with

co-occurring illnesses are more like-ly to die, and to die prematurely,from overdoses, accidents, violenceand a variety of medical issues.

An important factor to keep inmind is that poorer outcomes areassociated even with very mild substance use in young adults withserious mental health conditions.Because young adults with seriousmental health conditions have veryvulnerable brains, patterns of sub-stance use that are “normal” in theirfriends and relatives without mentalhealth conditions, are likely to interfere with their recovery.

In fact, research has shown that patterns of use more often than once aweek, occasional episodes of intoxica-tion and even occasional use of power-ful hallucinogens and stimulants aredisruptive enough to the fragile brainequilibrium that over time youngadults will do worse than if they weretotally abstinent, or, if not addicted,had only an occasional beer or glass of wine.

3. Does alcoholism or drug abuse trigger a mental health conditionand/or does a mental health conditiontrigger alcoholism or drug abuse?

The answer is yes to both. In fact, thereare multiple pathways to developingboth mental health and substance useconditions at the same time, including:• Some people live with a severe

psychiatric illness that they inheritedgenetically and they also may devel-op an independent problem withsubstances, either abuse or depend-ence, which can also be hereditary.

• Some people develop a psychiatric illness independently, due to heredi-ty or other factors, and then findthat their previously “normal” sub-stance use pattern has now becomea problem that has to be addressed.

• Some people have triggered the onset of a severe and persistentmental health condition that may ormay not have started on its ownduring a period of heavy (and usu-ally out of control) substance use.Methamphetamine, cocaine, hallu-cinogens and marijuana are com-mon culprits, but this can happenwith alcohol, opiates and so-calledclub drugs (like ecstasy) as well.

• Some people begin using substances after developing a mental healthcondition in order to cope withpainful feelings or symptoms, copewith social isolation or escape fromdespair. Some of these individualsmay continue to abuse substances,but do not become addicted; othersmay go on to develop substancedependence or addiction.

4. What steps can young adults take if they live with a mental health condi-tion and are concerned that their drugor alcohol use is getting out of control?Should they avoid drugs and/or alcoholaltogether? It is very important for young adults to feel empowered, supported andinspired to have hope for recovery andto be able to take ownership of theirown recovery process. No young adultwants to develop a serious mentalhealth condition and figuring out howto make their own decisions about howbest to have a happy and productivelife is hard, slow work. If they are wor-ried about their substance use, it istheir job, and their right, to figure outhow to make the best decisions regard-ing substance use, including nicotine,

in order to have the happiest, mostsuccessful, productive life they canpossibly have.

In this spirit, it is a good idea foryoung adults to find people they trust,including professionals, family mem-bers and friends and, very importantly,peers who are further along the recov-ery path. It is helpful for young adultsto share with them what is happeningin their lives and any concerns theyhave so their family and friends canhelp them make the best decisions forthemselves.

In this context, those who want tobe helpful to young adults should notbe in the business of asking youngadults to avoid substances altogether.The paradox of using substances is thatthey do make everyone feel better inthe short run, at least most of the time.At the same time they are likely to becausing harm to a young adult’s fragilebrain in the long run—short-termsymptom relief is usually associatedwith longer-term symptom reboundand worsening. Everyone has to gothrough their own decision makingprocess and it is the job of young adultsupporters not to preach but to partnerwith them in that process. We makerecommendations for abstinence, but itis most important that young adultsupporters help young adults figure outstep-by-step what they want to do withrecommendations they receive.

The biggest danger for young adultsis that they will seek advice not frompeers who are working on recovery butfrom peers who are themselves in bigtrouble. It is more helpful for youngadults to “stick with the winners” toget the best advice. The second biggestdanger is that young adults often feelthat they cannot trust anyone theyknow to tell the truth about their sub-stance use. If young adults are usingdrugs and alcohol, and not telling any-one who could help them think abouttheir decisions, other than substanceusing peers, they are at greatest risk. Itis a risk to ask for help, but it is a goodrisk to take.

It is all of our jobs to help youngadults feel that sharing honest informa-tion is a good idea, for which they willget a round of applause, and not bepunished.

5. What are effective approaches totreating a young adult living with co-occurring mental health and substanceuse disorders? What are the key factorsthat make these approaches effective? The effective approach to helping any-one of any age who has co-occurringconditions is what is generically called“integrated treatment,” where clientsengage in a relationship with an indi-vidual, a team, a program or a commu-nity of recovering peers and clinicians,and in the context of that relationshipthey work on addressing each of theirissues, step-by-step over time, in orderto achieve their recovery goals of ahappy life.

The Integrated Dual DisorderTreatment (IDDT) Toolkit (available atwww.mentalhealth.samhsa.gov/cmhs/communitysupport/toolkits/cooccurring/)is an evidence-based toolkit specificallydesigned for adults, including youngadults, with serious mental health conditions and substance use issues.Although some systems have specialIDDT teams or programs, these “tools”can and should be applied to any typeof program. In many county and statesystems, all programs are working onbecoming recovery oriented and co-occurring capable, so that people with co-occurring issues can get helpanywhere. Key elements of successfulco-occurring conditions care includethese basic principles: • Individuals with co-occurring

conditions should be welcomed,including when they are activelyusing, and inspired with hope thatthey will get help to address all theirissues to have a happy life. Thereshould be welcoming “screening” sothat it is easy for the client to shareall of his or her issues, and havethem documented and addressed.

• Relationships should be empathic, hopeful, integrated and strengthbased and address all problems asprimary.

• Substance use issues, like other conditions, do not get “fixed,” somuch as people are helped to buildon their existing strengths andhopes to make step-by-step progressover time for all their issues in aprocess that is adequately supported,adequately rewarded (rounds of



applause for small steps or progress),strength based (build on existingsuccesses), skill based (learning howto make progress very concretelyone day at a time), stage matched(matching progress to stage ofchange or stage of treatment) andcommunity-based learning.

In general, like for other conditions,people make progress slowly. Theresearch will show that for youngadults first entering treatment with co-occurring conditions, who are notinitially interested in changing theirsubstance use, a good integrated treat-ment approach will take three to fouryears for half the young adults to bestably sober, while most of the rest are making significant progress eventhough they may still be using.However, if a young adult gets engagedin a good integrated partnership, he orshe can make important progress in sixto twelve months, in terms of reducinguse, getting in less trouble and havefewer crises.

6. What can family members or friendsdo to help a young adult who is usingand abusing alcohol and/or drugs?What can family members or friends doto support compliance with servicesand supports?

Family and friends are very impor-tant supports to young adults strug-gling with multiple conditions. Themost important way to be helpful isnot by trying to make the person be“compliant” or by confronting the person with how much you want themto change.

The best strategy for family membersor friends is to be an engaged partner—to join their friends or family membersin love, especially when they are struggling, welcome them as they are,inspire them to identify their ownhopeful goals and help them thinkthrough their plans step-by-step.Strength-based, slow step approachesare better than trying to send them to aprogram they do not want to go to inorder to fix them.

Family members and friends shouldfocus on the amazing periods of timewhen their loved ones did well, even ifjust for a few days. Empathize with

how much work they needed to be successful and help them figure outhow to get one piece of additional helpand support in order to do a little better the next time. If they are able totrust you enough so you become part oftheir support system, they may call youwhen they feel like using, or when theyslip, and you can give them a round ofapplause for calling and help themthrough the next step.

7. What questions should a person ask about the treatment he or she isreceiving to ensure it is effective? As noted above, providers and systemsare in different stages of developmentrelated to effective integrated co-occur-ring services. However, at this time,most providers recognize the impor-tance of helping people with both men-tal health and substance use issues andmost systems have some type of servicesavailable.

When seeking treatment, ask thefollowing questions to ensure you are receiving an effective approach totreatment:• I want help with both mental health

and substance use issues. Can youhelp me? If not, where should I go?

• Do you welcome people who have both types of issues?

• Are your programs and staff working on being integrated and co-occurring competent?

• How would you help someone like me make progress one day at atime?

• Do you know how to do interventionsthat are matched to my “stage ofchange” for each issue?

• Can you help me learn some skills for dealing with substance use,building on what I am already doingright?

• If I tell you that I am using substanceswill you punish me or will you helpme work on it?

• I do not want to be referred to a regular addiction program. I wanthelp from my mental health teamfor both problems, can you do that?

It is important to note that somesystems will say, “We have a dual diagnosis program but it is very smalland there is a long waiting list.” If this

happens, you should respond by asking, “What can you help me workon right now? I am willing to workwith my team to make small steps ofprogress.”

8. In the co-occurring field, is there a focus on peer support and recovery-focused services? What role do psychosocial interventions play? What recovery-based models exist and are emerging? Peer support and recovery-orientedservices are a critical component of allmodels of co-occurring services. Bestpractice models of integrated treatment,such as IDDT, have recognized that forpeople with co-occurring conditions tobe engaging successfully in care, theyneed to be in a process that focuses onhope and recovery, not just on symp-toms and disorders. In this process,peer support is a critical component.

More and more people living withmental illness are working in the fieldas peer specialists and the vast majorityof peer specialists (in my experience,usually four out of five) are in dualrecovery. There is a similar modelemerging in the world of addictiontreatment, called “peer recovery coach-ing,” that has been researched primarilyat Chestnut Health Systems in Illinoisby William White, Mike Boyle, DavidLoveland and others.

All treatment interventions for substance use conditions, whetherabuse or dependence, are primarilypsychosocial, whether or not the individual has a co-occurring mentalhealth condition. The best practice of “integrated” care involves the bestpractice for an individual’s mentalhealth condition combined with thebest practice intervention for substanceuse, at the same time, within the same team.

This article continues on NAMI’s Child and Adolescent Action Center website,visit www.nami.org/caac.

Editor’s Note: The questions included in this article were submitted by youngadults interested in learning more aboutco-occurring conditions. NAMI greatlyappreciates the time and expertise Dr. Minkoff provided for this article.




S T A T E N E W S

NAMI North Carolina’s Young FamilyProgram: 20 Years Strongby Jennifer K. Rothman, young family program director, NAMI North Carolina

Last year, NAMINorth Carolinacelebrated its25th anniversarywith an annualconference dedi-cated to lookingback at ouraccomplish-ments. Muchlike many fami-lies, we have

grown! We have seen the organizationgrow from primarily family members toinclude individuals living with mentalillness. We went from only offeringFamily-to-Family to offering six NAMIeducation programs across the state.Best of all, we realized that our YoungFamily program has grown steadilysince its start in 1989. NAMI NorthCarolina was always aware of the needsof families with children and adolescentsliving with mental illness and hasworked hard to ensure these needs areaddressed.

For the past 20 years, the YoungFamily program has been reaching outto families in need by creating supportsand programs that are offered throughour 35 local affiliates. We also keepparents of children and adolescents in mind when we plan for all of ourevents. We always make sure thatinformational exhibits addressing theneeds of children and adolescents areavailable at all of our conferences.

NAMI North Carolina believes thatwe all need a stable support system and that is why Young Family SupportGroups were developed—to make surethat there is support available for par-ents of children and adolescents. Thereare many groups for family members of adults, but they rarely touch onissues with schools, the juvenile justicesystem, medication and other topicsspecific to children. Our supportgroups give these parents a place to go where they are surrounded by other

people who are going through the samething—there is no better support thanhaving someone who understands. Wecurrently offer these groups in sevencounties and are continuing to expand.

These families and those that workwith children living with mental illnessalso need to be educated. Our educa-tional presentations get the word outabout NAMI while educating parents,schools and other professionals aboutserious mental illness in children. Allof our presentations touch on majordiagnoses, early recognition, home andschool-based interventions and mostimportantly, what the child and thefamily are going through. We have

worked hard to get into the school systems since teachers spend as muchtime with our children as families do,but most do not know how to accom-modate a child or adolescent who hasbeen diagnosed with a mental illness.This is where we come in.

Along with educating parents andprofessionals, NAMI North Carolinahas been working to reach out to college students through the NAMI on Campus clubs. These clubs, run bystudents to help educate the campusabout mental health, have worked hardto offer different educational events to help students better understandmental illness and where they can gofor help—and that they are not alone!Some events that have been held,include movie viewings (A BeautifulMind, Out of the Shadows and As Goodas it Gets) with a professional paneldiscussion afterwards, suicide aware-ness workshops, movie viewings forchildren with mental illness and theirfamilies, stress fests with different de-stressing activities like coloring,playing with clay, getting a massage

and more and countless other activitiesthat help to bring awareness to the student population.

Our affiliates across the state havebeen supportive in reaching out to the younger population because theyunderstand that this generation is ourfuture and we need them to be educat-ed and ready to advocate. We werethrilled when NAMI National releasedthe NAMI Basics program. We held ourfirst teacher training in April 2008.Since then, we have trained 50 teach-ers, have offered 10 classes and havereached 76 parents and caregivers. We have a highly motivated group ofteachers who understand the impor-

tance of this curriculum and are doingeverything they can to fill up theirNAMI Basics classes, all while stillkeeping their own homes runningsmoothly.

NAMI North Carolina’s YoungFamily program is supported throughthe Division of Mental Health/Developmental Disabilities/SubstanceAbuse Services Federal Block Grantmoney. Without this funding, many of the young family activities wouldnot be possible.

We are extremely proud of ourYoung Family program. We are makingsure that all grounds are covered andthat children and adolescents and thosewho care for them continue to be ahigh priority. We hope to continue to evolve and reach more young families in years to come so that theywill one day be educating the next generation.

To learn more about NAMI NorthCarolina’s Young Families program,contact Jennifer K. Rothman at [email protected].

Jennifer K. Rothman

We were thrilled when NAMI National released

the NAMI Basics program.

Voices of ChangeFive years ago, my husband and I were introduced to the world of mental illness. Our 25-year-old daughter experienced a psychotic break. She had been hearing voices for over a yearand a half. Unfortunately, we onlylearned of this at the hospital intake. I said, “Kim, you have not been hearingvoices.” Her response, “Oh yes I have. I just did not want to tell any-body. They would think I was crazy.”

We have learned a great deal aboutmental illness in the five years sinceshe was hospitalized. A NAMI MutualEducation Support and Advocacy(MESA) class opened our eyes througheducation and pushed us onto the pathof advocacy. In 2008, after retiring fromteaching, I became a MESA facilitatorand took over the presidency of NAMIVirginia Beach.

NAMI Virginia Beach has beenbuilding its membership. As a formerteacher, reaching out to the high schooldemographic seemed a natural progres-sion. Not only would we reach a newand critical audience, but a passionateand energetic one as students are oftenwilling to take on important and chal-lenging causes. Fighting the stigma ofmental illness and reducing the barriersto assist those in need is precisely sucha cause. In October 2008, I began talking to Belinda Hutsenpiller, an AP Psychology teacher and former col-league, about the possibility of forminga mental health awareness club at CoxHigh School, based loosely on NAMIon Campus.

As serendipity would have it, atalmost the same time, KathleenWakefield was also approaching Ms.Hutsenpiller about the possibility offorming a club. Ms. Wakefield has adifferent and much more poignantstory. On July 25, 2001, in the space of a moment, Ms. Wakefield’s lifechanged forever when a police chaplainknocked on her door and informed her

that her 21-year-old son, Jake, had diedfrom a self-inflicted gunshot wound.Jake’s suicide gave Ms. Wakefield a new life goal: “It is my deepest desireto honor Jake’s life by educating teens and young adults about depression andsuicide.” With this in mind, Ms.Wakefield established the foundation, I Need a Lighthouse (INAL), in 2001to carry out her mission.

Getting StartedNAMI and INAL’s club goals mirroredeach other, and fortunately, Ms.Hutsenpiller, along with Lisa Kopacz,another AP Psychology teacher at CoxHigh School, agreed to co-sponsor and form a club. Thus began the firstLighthouse Psychology Club in 2008.The first full meeting was held inFebruary 2009 and more than 40 students showed up. Since that firstmeeting at Cox High School, threeadditional Lighthouse Psychology Clubshave been added at Bayside, FirstColonial and Ocean Lakes High Schools.

A club’s success depends, in part, onlimiting the additional work imposedon the sponsors. To this end, commonpractices have developed across theclubs, including:• The clubs meet once a month for

one hour;

• Students are responsible for getting to and from the events off school grounds;

• There are no dues; • Teachers receive a small stipend

from NAMI and INAL; and• If the club members want food at a

meeting, they bring it.

What We Have DoneFighting the stigma of mental illnessand raising awareness of the communityresources available to assist those in need are the most pressing andimmediate goals of the LighthousePsychology Clubs. This mission isprincipally met through the educationof our members, whether it be broad,introductory surveys of the mentalhealth issues and programs in the community or issue-specific training,such as suicide prevention.

Some of our best programs havetaken place outside of the school. Forexample, the Virginia Beach PsychiatricCenter (VBPC) hosted a meeting todiscuss careers in the mental healthfield. The VBPC marketing directorwas able to provide the students withpertinent and specific career advice, aswell as resume writing tips. In additionto the presentation, she arranged a visitto one of the psychiatric floors, whichproved to be an eye-opening experiencethat the students still discuss.

However, we have found that presentations and training alone arenot enough. In addition to regular programming, each club is required toengage in a community service project.Toward that goal, this year each clubcompleted a project, including:• After a presentation by Beach

House, a mental health club house,Cox students chose to provide giftsfor its members.

• Bayside students learned about The Harbors, an adult psycho-education program, and chose tocollect donations for its members.

Educating High School Students One Club at a Timeby Kay Ashby, executive director, NAMI Virginia Beach


A F F I L I A T E N E W S

Lighthouse Psychology Club members andsponsors at an I Need a Lighthouse run/walk

• First Colonial students sent cards to a senior citizens’ facility.

• Ocean Lakes adopted a family that had not celebrated a holiday orbirthday for over two years.

The Virginia Beach School Systemhas recognized NAMI Virginia Beachand INAL as Partners in Education. It is common to see LighthousePsychology Club members attendingNAMI meetings and participating inNAMI advocacy efforts. Most impor-tantly, an educational light has beenfocused on the facts and realities ofmental illness, empowering VirginiaBeach high school students to meet the associated challenges and preventneedless future tragedies.

Future PlansAs we marked the first year anniversaryof the Lighthouse Psychology Clubs,we did so with our eyes set firmly onthe future. Over the next two years,NAMI Virginia Beach and INAL haveset the educational mission of forminga Lighthouse Psychology Club in allVirginia Beach high schools. Key infor-mation for forming a club, as well asgeneral information regarding existingclubs, can be found on both the NAMI Virginia Beach website(www.namivb.org) and the INAL website (www.ineedalighthouse.org).

In the more near term, we look forward to continuing to develop andenrich our existing educational pro-gramming. We will visit Paul Aravich,Ph.D., a professor of neuroscience atEastern Virginia Medical School whosepassion is exploring the limitless possi-bilities of the brain. In his presentation,The Universe Between Your Ears, Dr.Aravich passes out gloves so that theaudience may see and feel the brains he is discussing.

Tips for Getting Started with HighSchool ClubsFinding the right sponsor is the criticalfirst step. It is worth remembering that:• Psychology teachers meet regularly

with students who have shown aninterest in the field;

• Health and physical education teachers in Virginia Beach teach aunit on suicide education and prevention; and

• Guidance counselors deal with mental health issues on a regular basis.

So far, all of our sponsors havecome from one of the above fields, withfour psychology teachers, one healthand physical education teacher and twoguidance counselors. However, poten-tial sponsors are certainly not limitedto just these departments. An enthusi-astic, well-liked teacher is key. While aco-sponsor is not necessary, it canlighten the sponsor’s load. Rememberthat each school system has its ownrequirements for starting a club and ateacher/sponsor is most likely bestequipped to navigate these specificissues.

Finally, the clubs are meant to be

educational and fun and are definitelynot designed or equipped to serve ascounseling sessions. While a represen-tative from NAMI Virginia Beach orINAL attends each meeting, studentofficers run the meetings and with thesponsor(s), set the meetings’ tone anddirection. Ultimately, it is the students’club, and so the more the studentmembers take ownership, the morerewarding and enriching the experiencebecomes for all of the members.

To learn more about LighthousePsychology Clubs, contact KathleenAshby, president, NAMI Virginia Beach,at [email protected] or KathleenWakefield, founder and executivedirector, I Need a Lighthouse, Inc., at [email protected].


A F F I L I A T E N E W S

Turbo Max: A Story for Siblingsand Friends ofChildren withBipolar Disorderby Tracy Anglada; Illustrated byDeirdre Baxendale

List Price: $9.95Soft Cover: 31 pages (2008)Publisher: BPChildren

This colorfully illustratedbook is a great companionfor children, ages 8 to 12,with a sibling living withbipolar disorder. Through aseries of Dear Diary entries,Rick, the book’s main char-acter, reveals what life is likeliving with a sister who liveswith bipolar disorder. Rick’s entries exhibit a wide range of emotions,including fear, embarrassment andconfusion as he comes to terms with his sister’s illness.

Rick’s diary entries reveal that helongs to win a Turbo Max remotecontrol car in a contest his commu-nity is hosting. However, his sister,Mandy, becomes hospitalized, so he

is unable to participate in the contest.Fortunately, Rick learns he has

a second chance to win the remotecontrol car of his dreams, but he will need the help of his sister. Withsupport from Mandy’s doctor, Ricklearns how to work with his sister.He discovers that there are construc-tive steps he can take to make lifeeasier for both of them. He comes toappreciate Mandy’s many talents andstrengths. She helps him reach his

dream and in theprocess recoversfrom her illness. Through Rick’sjourney, childrencome to understandthat bipolar disor-der is treatable andthat siblings canplay a positive rolein treatment andrecovery. The bookencourages siblings

to attend support groups and towork with a mental health providerto develop coping skills and to overcome a host of challenges.

The author truly understands theimpact that mental illness can haveon siblings, especially children. Sheprovides great coping strategies totake many of the bumps out of theroad.

B O O K R E V I E W

n June 2008, the Parent/Professional Advocacy League(PAL) released the research study, Medications andChoices: The Perspective of Families and Youth, whichoutlines the decision making process that families gothrough when deciding whether to use psychotropic

medication to treat their child’s mental health needs. Thestudy includes survey data from 274 parents and more than80 youth on the common experiences shared by the surveyrespondents. The following examples document some ofthose experiences:• Parents reported high levels of satisfaction with the use

of psychotropic medications because they worked moreeffectively than anything else available to them.

• Families described trying alternative forms of treatment for their children, often before and then in combinationwith psychiatric medications.

• Parents expressed concern about side effects and frustration with trying a succession of medications.

• Parents stressed their need for good communication with their child’s prescriber.

• Families reported seeking out several avenues to gather information about medications.

• Parents frequently conveyed that their health insurance was more likely to cover medications than therapy fortheir child.

• Youth reported satisfaction with their medications, noting that medications made a positive impact on their lives.

• Youth conveyed a desire for privacy around both their diagnosis and prescription medications.

• Youth shared that they did not know what would happen if they mixed their medications with alcohol or drugs.

• Youth expressed that they were often more worried about side effects interfering with day-to-day life thanlong-term effects.

• Youth reported less ambivalence than their parents about medications. Parents often felt caught between their ownexperience of the effectiveness of medication and theirconcerns that medications may be stigmatizing or riskywhile youth focused on all the ways medications havehelped them.

This survey report provides the family and youth perspectiveand voice in light of the recent national discussions aboutthe rising use of psychiatric medications to treat childrenand adolescents.

PAL is a family-driven advocacy organization inMassachusetts that is affiliated with the National Federationof Families for Children’s Mental Health. To access the survey, visit the PAL website at www.ppal.net/default/(Click on “Publications”).

The Perspective of Families and Youth on Medication and Choices

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This publication is supported by McNeil Pediatrics Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc. According toNAMI policy, acceptance of funds does not imply endorsement of any business practice or product.

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NAMI Beginnings - Summer 2010