nami beginnings - fall 2009

Fall 2009 � Issue Fourteen

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

The Medical Home:A Model for 21st Century Health Care

Improving ADHD Care withCommunity-based Interventions in Primary Care

IntegratingMental

Health andPrimary

Care

IntegratingMental

Health andPrimary

Care

The Medical Home:A Model for 21st Century Health Care

Improving ADHD Care withCommunity-based Interventions in Primary Care

2 | Nami Beginnings | Issue 14 | Fall 2009

C O N T E N T S

NAMI Beginnings is publishedquarterly 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:Jeff N. Epstein, Ph.D.Karen Hacker, M.D., M.P.H.Joshua M. Langberg, Ph.D.Marie Y. Mann, M.D., M.P.H.Ann NelsonBrenda Reiss-Brennan, M.S., A.P.R.N.Kathryn ScheeleStephanie Souza, M.B.ASherri Wittwer, M.P.A.

Staff Contributors:Darcy Gruttadaro and Dana MarkeyThe National Alliance on Mental Illness (NAMI) is thenation’s largest grassroots mental health organizationdedicated 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 borderlinepersonality disorder.

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

© 2009 by National Alliance on Mental Illness.All rights reserved

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

Federal Health Care Reform.As federal legislators tackle health carereform, it is timely to focus on the needto integrate mental health and primarycare, especially for children. It is in theearly years of life that most childrenand youth regularly visit physicianoffices. This is an important time toevaluate the health and well-being ofchildren, including an evaluation ofevery child’s mental health. Childrenshould be examined from the tops oftheir heads to the tips of their toes.When mental health concerns arise orare discovered, those children shouldbe examined more closely and providedwith the most appropriate and effectiveservices and supports. This approachis necessary to keep young lives ontrack—and is consistent with theapproach taken for other healthconcerns and conditions.

The early identification of mentalhealth conditions is essential to thehealth and well-being of children,along with links to effective servicesand supports. Referrals to child mentalhealth specialists is not always easygiven the workforce shortage of childpsychiatrists and other child-servingmental health professionals.

It is these and similar concerns thatled NAMI and other child advocacyorganizations to call on the leadershipof the U.S. Senate to include thefollowing five key principles in thefinal Senate health care reform bill:1. Affordable health care coverage

for all children, youth and youngadults up to age 26 that coversprevention, early identificationand intervention with effectivetreatment, services and supportsfor both mental health andsubstance use disorders.

2. Health plans that do not imposerestrictions on pre-existing conditions,

do not terminate coverage whenindividuals are sick and requirecoverage for mental health assessmentand treatment on par with thatprovided for general health care.

3. A health care system that requiresplans to provide culturally andlinguistically appropriate services toaddress racial and ethnic disparitiesas well as disability-based healthdisparities.

4. Incentives for the integration andcoordination of primary care andspecialty mental health services.

5. Incentives to produce a competentand accessible mental healthworkforce, prioritizing the needto address child mental healthworkforce shortages.We strongly encourage families to

weigh in on the health care reformdebate by contacting their Congressionalmembers and sharing the most pressingissues in their communities when itcomes to children’s health care coverage.

State and Local Budget Crises.These are unique and extraordinarytimes. Forty-eight states face extremebudget shortfalls, nearly all into thebillions of dollars. Unemployment isat an all-time high. Projections indicatethat it will take several years after therecession ends for states to recoverfrom the financial crisis.

Governors and local communityleaders will be forced to decide whereto cut budgets. The mental health andsocial service systems too often are thefirst on the chopping block. It is ourjob to let state and local leaders knowthat mental health and social servicebudgets are off limits.

In light of the budget crises, NAMIis developing a new section on ourWeb site that includes tools and

2 POLICY ALERTSCapitol Hill and State House Watch

3 Producing Positive Outcomesby Integrating Mental Healthin Primary Care

5 The Medical Home: A Model for21st Century Health Care

7 Improving ADHD Care withCommunity-based Interventionsin Primary Care

8 FAMILY VOICE

10 YOUTH VOICE

11 ASK THE DOCTOR

14 STATE NEWS

15 AFFILIATE NEWS

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

Health Care Reform and Budget Crises

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Fall 2009 | Issue 14 | Nami Beginnings | 3

Producing Positive Outcomesby Integrating Mental Healthin Primary Careby Brenda Reiss-Brennan, M.S., A.P.R.N, mental health integration director, Intermountain Healthcare

he health care crisis in theU.S. health system today hasexposed fundamental flawsin our ability as a society topromote health and well-being,

as evidenced by increased costs,inadequate access, medical errors andmarginalized quality. The uninsured,vulnerable and chronically ill sufferthe heaviest cost burden—discrimina-tion—and are most likely to gowithout needed care (Tu, 2009).

Children, adolescents and theirfamilies are particularly vulnerablewithin the current health deliverysystem. Most children and adolescentsmake at least one primary care medicalvisit annually, with approximatelyone in four experiencing a clinicallysignificant mental illness. Primary careproviders (PCPs) are often the firstresource for families and prescribe themajority of psychoactive medicationsto children in the United States, buttheir role in mental health servicedelivery remains ambiguous. Lowrecognition rates for early-onset mentalillness are the rule in primary care andaffected children often do not receiveany mental health services. Access tomental health services and supportshas become increasingly limited,particularly for children and familiesliving in rural areas (Ravens-Sieberer,2008). The public health importanceof the primary care setting in theidentification and management of

common pediatric mental illness hasnever been better recognized.

Over the last 10 years, IntermountainHealthcare has developed a team-basedapproach for caring for these children,adolescents and their families, knownas Mental Health Integration (MHI).The team includes a doctor and officestaff who are connected with mentalhealth professionals, communityresources, care management and ofcourse, the patient and the patient’sfamily.

As part of the MHI program, primarycare physicians and support staff,

mental health specialists and caremanagers receive standardized trainingto enhance their confidence and abilityto identify and treat mental illnessin primary care. This training isembedded in ongoing clinic operationsand focuses on how to engage respect-fully and sensitively with families andhow to reduce the impact of stigma bytreating mental health as a normal partof the health care experience.

What does this mean for child andadolescent patients seen in the MHIclinics? This means, first and foremost,

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advocacy materials that can be used to block proposed budget cuts to mental health services and supports. Please takeadvantage of these resources so that together we can protect the limited resources that exist for our fragile mental healthcare system. Beginning in early December, visit our newly developed state advocacy section on the NAMI Web site atwww.nami.org/stateadvocacy. Updates to come … stay tuned!

Brenda Reiss-Brennan

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that if a mental health related issuearises during a health visit, the primarycare doctor will discuss it with themand their families.

Mental health concerns are identi-fied and managed using several assess-ment tools and resources. At therequest of their doctor, patients andfamily members may complete a com-prehensive mental health screeningassessment, either on paper or online.Doctors use the assessment to screenfor mental health conditions, evaluatethe support system of the patient andfamily and ascertain their naturalcoping style and treatment preferences.The doctor reviews with the patientand family the health information andscreening tools, family risk factors,severity of symptoms and possiblediagnoses. The complexity of themental health concerns are mutuallyassigned to a mild, moderate or highlevel of complexity and then matchedto the appropriate level of teamintervention and care management.

Some children and adolescents mayhave anxiety, attention deficit/hyperactivitydisorder (ADHD), depression or actout at school. Some may have problemswith behavior or substance use that canlead them to juvenile court. Integratingmental health care into the primarycare setting helps the doctor who doesnot specialize in mental health appro-priately address these kinds of issuesor know when to refer to the on-sitemental health team. SinceIntermountain Healthcare has mentalhealth experts working in a teamapproach at its clinics, both preventivecare and consultation are readilyavailable. This is especially importantbecause families in a crisis or who needhelp may have difficulty being sentto another unfamiliar location.

The team approach includes havingpeer advocates, patients and families as

active members of the team. Eachmember has a defined complimentaryrole on the team that requires a processof co-production and mutual aid inreaching positive outcomes. Theco-production approach assumes thatpeople who use services have expertiseand assets which are essential to creat-ing effective services and good practice(Needham, 2009). This relational, team

approach assists patients and familiesin obtaining the education and servicesthey need to manage mental healthand other chronic conditions whileengaging them in self-managementand peer support activities to promoterecovery and wellness. Interventionsthat expand the relational familycontext of chronic disease are costeffective and enhance protective factorsthat can affect outcomes over time(Fisher et al., 2000).

A partnership betweenIntermountain Healthcare and NAMIUtah promotes community-basedsupport and engagement driven byfamilies and individuals living withmental illness. Care managers tap intothis advocacy resource to link patientsand families with support groups andpeer counseling that can help fosterrecovery.

The integration model providesaccess to a team-based approach in afamiliar setting where parents and theirchildren can seek answers for difficultconcerns that may have long-rangeeffects on the well-being of their fami-lies. Patients and doctors workingtogether in MHI clinics reportimproved satisfaction and better qualityoutcomes, all at a lower cost to thehealth system (Reiss-Brennan, 2006).MHI is a successful approach to reduc-ing stigma and improving the well-being and health of patients and theirfamilies with mental health conditionsin their primary care health home.Primary care physicians need familiesand individuals living with mentalillness to help them lead this effort inmaking programs like MHI availablefor all.

To learn more about IntermountainHealthcare, visit their Web site atwww.intermountainhealthcare.org.

ReferencesFisher, L. et al. (2000). Can addressing familyrelationships improve outcomes for chronic dis-ease? Journal of Family Practice, 49, 561-566.

Needham, C. (2009). Co-production: anemerging evidence base for adult social caretransformation. Research Briefing: Social CareInstitute for Excellence, March 1-22.

Ravens-Sieberer, U. (2008). Mental Healthof Children Adolescents in 12 EuropeanCountries-Results from the European KID-SCREEN Study. Clinical Psychology andPsychotherapy, 15, 154-163.

Reiss-Brennan, B. (2006). Canmental health integration in a primary care set-ting improve quality and lower costs? Journal ofManaged Care Pharmacy, March, 12 (2Supplement), 14-20.

Tu, H. (2009). Financial and health burdensof chronic conditions grow. Tracking Report:Health System Change, April, 24, 1-6.

PHQ-9 is a patient health questionnaire used to help diagnose depression. GS scores areglobal severity scores used to measure overall psychological distress.

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Primary care physicians need families and

individuals living with mental illness to help

them lead this effort in making programs

like MHI available for all.

he medical home is a modelfor 21st century health care,with a goal of addressing andintegrating high quality healthpromotion, acute care and

chronic disease management in aplanned, coordinated, comprehensive,compassionate, culturally effective andpatient/family-centered manner.It has been recognized as a model ofcare that not only benefits children andyouth with special health care needsbut all children, youth and adults—particularly those in “safety net settings.”

The American Academy ofPediatrics (AAP) first coined the term“medical home” in 1967 to describea central source of a child’s pediatricrecords. The concept evolved froma centralized medical record to anapproach of providing health care thatrecognizes the needs of the total childand family in relation to health, educa-tion, family support and the socialenvironment. What does that mean fora child and family? As promoted bythe AAP, the medical home is built ona trusting, collaborative, workingpartnership between the child, familyand primary care practitioner in coop-eration with specialty care practitionersand the community network of medicaland non-medical resources. With acentral focus on the needs of the child,the medical home is an available andreliable source for comprehensive carewhere families are welcomed andrecognized as the constant in a child’slife. Their cultural backgrounds arerespected and they receive the assis-tance they need to be involved in theirchild’s care, including easily under-standable information and interpreterservices. The medical home teamworks to provide ongoing primary andpreventive care. The team also facili-tates access to and coordinates with abroad range of specialty, ancillary and

related community services to providecomprehensive services for the childand family. This includes those thataddress mental health and developmen-tal concerns. The medical home teamassists with transitioning as a childmoves along and within systems ofservices and from adolescent to adulthealth care.

In March 2007, the AAP, theAmerican Academy of Family Physicians,the American College of Physicians andthe American Osteopathic Association

released Joint Principles of the Patient-Centered Medical Home to describe anapproach to providing comprehensiveprimary care for children, youth andadults. Adopting many characteristicsof the AAP definition, the patient-centered medical home (PCMH) alsoemphasizes quality and safety ashallmarks of the medical home andrecognizes the added value provided topatients who have a PCMH. The levelof national collaboration among healthprofessionals has raised the scope and


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The Medical Home: A Modelfor 21st Century Health Careby Marie Y. Mann, M.D., M.P.H., medical officer, Child Health Bureau, Health Resources and Services Administration

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NAMI Basics,an education

program for parents and caregiversof children and adolescents livingwith mental illness, continues toexpand across the country withoutstanding results.

It has been implemented success-fully in more than 20 states andadditional states have been selectedto receive training on the programthis fall, including Massachusettes,New York, Oklahoma, Virginia andWashington.

NAMI Basics focuses on providingparents and caregivers with theinformation and support they needto make the best decisions possiblefor their children, families and them-selves and to cope effectively withtheir situation. It has received over-whelmingly positive feedback fromparents and caregivers who haveparticipated in the course.

NAMI Basics is taught by parentsor other primary caregivers who

have lived experiences with theirown children. It is free of charge andincludes six different classes, twoand a half hours each, that cover thefollowing topics, among others:• the stages of emotional reactions

of families to mental illness;• the biology of mental illness and

getting an accurate diagnosis;• the latest research;• overview of treatment options;• the impact of a child’s mental

illness on the rest of the family;• strategies to address challenging

behaviors;• problem solving, listening,

communication and coping skills;• overview of child-serving systems;

and• advocacy.

To learn more about NAMIBasics or to see if your NAMI stateorganization or local affiliate hasthe program available, visit theNAMI Basics Web site atwww.nami.org/basics.

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

scale of medical home activities anddiscussions throughout the nation.Seen by many as a solution to a frag-mented health system, the PCMHmodel is generating broad supportamong a wide and diverse range ofhealth care stakeholders. These stake-holders share the following goals:• improving delivery of comprehensive

primary care;• having better outcomes for patients;• establishing more efficient payment

to health care practitioners;• increasing satisfaction;• maintaining better value;• increasing accountability; and• increasing transparency for purchasers

and individuals living with mentalillness.The Patient Centered Primary Care

Collaborative (www.pcpcc.net), madeup of national business groups, healthcare plans and organizations, othermedical specialty societies and patientorganizations, is helping to fosterpolicies that support medical homeimplementation at the state and federallevel. As of the end of 2008, more than40 states have some form of legislationto support or mandate the medicalhome approach for care delivered tosome or all of the states’ populations.Numerous pilot and demonstrationprojects are underway to test the valueof the medical home, to examine thenecessary financing mechanisms tosustain the medical home and to assesshow best to implement it. It is antici-pated that widespread implementationof the medical home approach willresult in increased access to highquality health care for our nation’syouth and adults.

The Health Resources and ServicesAdministration’s Maternal and ChildHealth Bureau (HRSA/MCHB)supported the development of theNational Center for Medical HomeImplementation Web site(www.medicalhomeinfo.org),which is the premier resource for thoseworking to improve the lives of chil-dren and youth, including those withspecial health care needs and their fam-ilies. The Web site contains resources,state-specific links, information andtools and practical strategies on how

to provide medical homes. Nearly allmaterials on the Web site are availablefree to download.

Through its demonstration grantprograms, HRSA/MCHB has also sup-ported medical home activities in everystate and territory to build the necessarystate and community infrastructureneeded to assure access to a medicalhome for every child. The EarlyChildhood Comprehensive SystemsGrants in every state include medicalhomes as a key element. The StateImplementation Grants for ImprovingSystems of Services for Children withSpecial Health Care Needs identifyaccess to medical homes as a keycomponent and grantees focus at leasta portion of their project activities onpromoting the medical home concept.

In addition, HRSA/MCHB providesfunding to Family-to-Family HealthInformation Centers (www.familyvoices.org/info/ncfpp/f2fhic.php) in the 50states and Washington, D.C., to pro-vide family-friendly information andtraining to families on accessing andfinancing health care services andsupports for their children. The centersalso provide referrals and support toconnect families with family advocatesand professionals in their communities.

To learn more about the medicalhome, contact Marie Y. Mann [email protected].


F E A T U R E

www.familyvoices.org/info/ncfpp/f2fhic.php

www.medicalhomeinfo.org

www.pcpcc.net

BackgroundAttention-Deficit/Hyperactivity Disorder(ADHD) has a prevalence rate of 8.6percent among children, which trans-lates into approximately five millionchildren in the United States whorequire ADHD-related mental healthservices (Froehlich et al., 2007). Themental health system and specialtymental health providers in the UnitedStates do not have the capacity toaccommodate this number of children.As a result, the majority of childrenwith ADHD receive diagnosis andtreatment services from their primarycare physicians.

The American Academy ofPediatrics (AAP) recognizes the needfor primary care physicians to assessand treat children with ADHD. In2000 and 2001, the AAP issuedconsensus guidelines, which provideprimary care physicians with a set ofevidence-based recommendations forthe assessment and treatment ofchildren with ADHD (AAP, 2000;AAP 2001). The AAP assessmentguidelines emphasize the importanceof collecting parent and teacherstandardized rating scales and usingthe Diagnostic and Statistical Manualof Mental Disorders Fourth Edition(DSM-IV) criteria as the basis formaking an ADHD diagnosis. Treatmentguidelines focus on providing systematicfollow-up, including the collection offollow-up parent and teacher ratingscales to quantitatively assess responseto treatment. Despite promotionalefforts and physician awareness, it isevident that the AAP recommendationsare not being reliably implementedin the community.

The ADHD Collaborative InterventionCincinnati Children’s Hospital MedicalCenter (CCHMC) developed anintervention termed the ADHDCollaborative Intervention, which isdesigned to promote adherence tothe AAP practice guidelines amongcommunity providers. More than200 primary care physicians in greaterCincinnati have been trained with theADHD Collaborative Intervention.

The ADHD CollaborativeIntervention begins with two lecturesdevoted to teaching the recommenda-tions provided by the AAP on ADHD.However, the ADHD CollaborativeIntervention was developed based uponthe realization that the didactic lecturesalone are not sufficient for changingphysicians’ behaviors (Langberg,Brinkman, Lichtenstein & Epstein,2009). Implementing the AAP ADHDguidelines in a community practice isa complicated process that involvesmultiple steps and requires coordina-tion of personnel on multiple levels.The ADHD Collaborative Interventionassists physicians with modifyingtheir daily office policies, proceduresand staff responsibilities in order toefficiently and effectively provideevidence-based care for childrenliving with ADHD. Physicians arealso provided with a variety ofassessment tools (e.g., VanderbiltADHD Rating Scales) and are giveninstructions on administration andinterpretation.

After training, each practice keeps alog of elementary school-aged patientswho are newly diagnosed with ADHD.The CCHMC research team conductsmedical chart audits of each patient

listed on the log on a quarterly basis.Physicians are then sent a quarterlyscore card summarizing how they aredoing in complying with the AAPguidelines. A physician at CCHMCwith expertise in the diagnosis andtreatment of ADHD in communitysettings is available to consult withpractices on challenges they experiencewith implementation.

ResultsBefore receiving the intervention,rates of AAP recommended practicebehaviors were low in the community.After completing the intervention,primary care providers showed sub-stantial improvement in their use ofAAP recommended practice behaviorsduring the assessment and treatmentof children with ADHD. For example,use of standardized parent and teacherrating scales to formally assess anddiagnose ADHD as required by theDSM-IV increased from 52 percentbefore the intervention to nearly 100percent after the intervention. Theuse of standardized parent and teacherrating scales to consistently and thor-oughly monitor medication responseimproved from a baseline of 9 percentto 40 percent.

SignificanceThis study demonstrates the effective-ness of a community-based interven-tion with primary care providers thatpromotes the adoption of the AAPguidelines for assessing and treatingchildren living with ADHD. Since thisintervention was implemented acrossa large and diverse sample of primarycare providers and because the inter-


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Improving ADHD Care withCommunity-based Interventionsin Primary Careby Jeff N. Epstein, Ph.D., and Joshua M. Langberg, Ph.D., Department of Pediatrics, University of Cincinnati Collegeof Medicine, Cincinnati Children’s Hospital Medical Center, Center for ADHD

vention comprehensively addressesboth assessment and treatment ofchildren with ADHD, it appearsparticularly amenable to training largenumbers of primary care providers toadhere to the AAP ADHD assessmentand treatment recommendations.

What Is Next?With funding from the NationalInstitute of Mental Health, investigatorsat Cincinnati Children’s Hospitalare currently working on ways todisseminate this intervention to othercommunities. Currently, pediatriciansin Dayton, Ohio and Lexington andLouisville, Ky., are being trained touse this intervention through video-conference training and a Web portalthat allows pediatricians to collectparent and teacher rating scales online.The Web portal scores rating scalesin real time and provides pediatricians

with reports as well as immediatewarnings when side effects emerge orbehavioral deterioration occurs. TheWeb portal also continually updatesinformation regarding physicianpractice behavior, thereby allowingpediatricians to view how they aredoing in relation to the AAP guidelines.As a way to encourage pediatriciansto engage in this quality improvementintervention, the investigators havereceived approval as an officialAmerican Board of Pediatrics qualityimprovement activity, which is nowa requirement for pediatricians wishingto renew their licenses. The investigatorsat CCHMC hope to effectively dissemi-nate this intervention to practicesacross the country.

For more information about theADHD Collaborative Intervention,contact Joshua M. Langberg, Ph.D.,at [email protected].

ReferencesAmerican Academy of Pediatrics (2000). Clinicalpractice guideline: Diagnosis and evaluation ofthe child with Attention Deficit/HyperactivityDisorder. Pediatrics, 105, 1158-1170.

American Academy of Pediatrics (2001).Clinical practice guideline: Treatment of theschool-aged child with Attention Deficit/Hyperactivity Disorder. Pediatrics, 108, 1033-1044.

Froehlich, T., Lanphear, B., Epstein, J.,Barbaresi, W., Katusic, S. & Kahn, R. (2007).Prevalence and treatment of attention-deficit/hyperactivity disorder in a national sample ofU.S. children. Archives of Pediatrics andAdolescent Medicine, 161(9), 857-864.

Langberg, J.M., Brinkman, B.B.,Lichtenstein, P.K & Epstein, J.N. (2009).Interventions to promote the evidence-basedcare of children with ADHD in primary caresettings. Expert Review of Neurotherapeutics,9, 477-487.


F E A T U R E

Navigating the Insurance Mazeby Ann Nelson, parent and family research coordinator, NAMI Connecticut

F A M I L Y V O I C E

y incredible daughter,Emily, is a compassionate,spontaneous and coura-geous 16-year-old girlwith an inventory of

mental health diagnoses longer than aweekly grocery list. During the courseof a 12-year period, she was diagnosedwith anxiety, attention-deficit/hyperactivity disorder (ADHD), early-onset bipolar disorder, oppositionaldefiant disorder (ODD), pervasivedevelopmental disorder (PDD) andpsychosis not otherwise specified(NOS). She has been on more than22 different psychiatric medications,hospitalized three times (at the ageof 8), educated in four different thera-peutic schools (two of which wereresidential) and received numerousoutpatient and home-based mentalhealth services. The grief and heart-break I have felt for my daughter has

been excruciating. In addition to thisvisceral pain, I have been furtherexhausted by navigating the complexi-ties and challenges of our mentalhealth system.

I have faced numerous obstaclesin my relentless advocacy for qualitymental health care for my daughter.One of the most burdensome struggleshas been the arbitrary restrictions andlimitations placed on her care by ourhealth maintenance organization(HMO). Our HMO has frequentlyrefused to authorize the necessaryinpatient and outpatient psychiatrictreatment for Emily, citing variousreasons including the following:• the treatment is not medically

necessary;• she does not meet the criteria for

inpatient admission or ongoinghospital stay;

• she has been admitted recently,

so we are allowing her only 48hours of inpatient stay;

• only the generic form of thatmedication is covered;

• we do not cover community-basedservices; and

• the reasonable and customarycharge for that practitioner is $65,not $120.In my attempt to steer through and

around these insurance barriers, I havefound several state agencies that focuson individuals living with mentalillness and their families to be islandsof hope in this endless maze. Theseagencies have offered me and manyother families support and a wealthof information on how to hold insur-ance companies accountable. I offerkudos to three specific state agenciesthat have been tireless warriors inensuring that insurance companies arecommitted to meeting their contractual

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F A M I L Y V O I C E

obligations to individuals living withmental illness and their families.

The first agency is the ConnecticutState Attorney General’s Office. Withinthis office is a specialized department,the Health Care Advocacy Unit, whichprovides advisory assistance to individ-uals living with mental illness andfamilies who have been denied paymentfor health-related expenses involvingmanaged care. Their efforts have result-ed in multiple investigations into theinsurance industry’s practices regardingaccess and coverage for mental healthservices for children. Press conferenceshave been held and legislation has beendeveloped to protect the rights of childrenand adolescents living with mentalillness and to ensure that Connecticut’smental health parity laws are upheld.

Connecticut also has a uniqueadvocacy entity, the Office of theHealth Care Advocate, which isdedicated to serving Connecticut’shealth insurance consumers by resolv-ing conflicts within insurance plans.This organization takes a multifacetedapproach, including directing advocacyfor individuals and families, educatingthe insured on their rights and theappeals process, providing coordinationbetween various state and privatehealth agencies and proposing legisla-tion to remove unnecessary barriersto health care access under managedcare plans.

A third state agency that has part-nered with families is the State Officeof the Child Advocate. The agency’smission is to oversee the protectionand care of children and to advocatefor their well-being. The ChildAdvocate often collaborates with theAttorney General’s Office to collectivelypromote fair and responsible treatmentpractices for all children in the state.I was privileged to work with boththe Child Advocate and the AttorneyGeneral’s Office in an investigation intoprivate insurance companies’ inade-quate availability of child psychiatristsin their networks. This investigationwas published in A Report of theAttorney General and Child Advocate’sInvestigation of Mental Health CareAvailable to Children in Connecticut.

In addition to these agencies, I havebeen fortunate to be surrounded by a

team of state and federal legislatorswho have been champions for childrenand adolescents living with mentalillness. Sen. Christopher Dodd(D-Conn.), a senior democrat on theSenate Committee on Health, Education,Labor and Pensions (HELP) andchairman of its Subcommittee on

Children and Families, has been avoracious advocate for individualsliving with mental illness. He has beena long-standing supporter of federalmental health parity legislation. I hadthe joy of working with him andcelebrating with him in 2004 withthe passing of The Garrett Lee SmithMemorial Act, federal suicideprevention legislation.

You may not live in Connecticut,but all states have patient advocacy

agencies and organizations as well aslegislators committed to the lives ofchildren and adolescents living withmental illness. I encourage you tocontinue to persevere in obtaining thenecessary mental health care for your-self and your family. The first step inthis journey is to partner with your

NAMI state organization or your localNAMI affiliate. It is in the company ofothers like ourselves that we can growamidst adversity. As Winston Churchillarticulated, “a pessimist sees difficultyin every opportunity; an optimist seesopportunity in every difficulty.” Maywe be relentless optimists with the flagof recovery forever waving.

To learn more about navigating theinsurance maze, contact Ann Nelson [email protected].

he University of Texas MedicalBranch (UTMB), the RobertWood Johnson Foundation,

the Galveston Independent SchoolDistrict and Galveston’s philanthropiccommunity have established andsuccessfully implemented a collabo-rative Telehealth for School-basedMental Health program to meet themental health treatment needs ofadolescents in area secondary schools.

Telehealth for School-basedMental Health aims to close the gapin access to mental health servicesfor adolescents in the Galvestoncommunity by providing families anddoctors face-to-face communicationvia state-of-the-art video conferencingequipment. The program links fourschool-based Teen Health Clinicswith mental health providers on theUTMB campus and elsewhere. Itallows for timely care to be providedto those who otherwise may not haveaccess to care for a variety of reasons.The program also incorporates an

electronic medical system to guaran-tee coordination of care betweenproviders and school sites.

The program has receivedrecognition from the Agency forHealthcare Research and Qualityas an innovative, evidence-basedprogram. The program is currentlyin its third year and has producedpromising results in improvingaccess to mental health services foradolescents and their families andimproving outcomes for adolescentsliving with mental illness.

To learn more about the Telehealthfor School-based Mental Healthprogram, visit www.utmb.edu/hpla/telehealth.asp.

Telehealth for School-based Mental Health

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The agency’s mission is to oversee the

protection and care of children and to

advocate for their well-being.

www.utmb.edu/hpla/telehealth.asp


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Kidshops: Learning I Am Not Aloneand How to Support Siblings and Peersby Kathryn Scheele, sibling, Age 13

y name is Kat and I goto a program calledKidshops. NAMIMinnesota developed theKidshops program for

children with a sibling or parent livingwith a mental illness. It is free foryouth ages 7-17 and is facilitated bytrained adults who either have a siblingor a parent living with a mental illness.

Basically, it is a program for kidslike me who have a brother, sister orparent living with a mental illness.It has helped me to understand thedifferent kinds of mental illness peoplelive with. When I go to Kidshops, theyteach me that even though someone isdiagnosed with a mental illness, theyare not that different, even when otherkids sometimes think they are weird.They are still just kids. Kidshops hastaught me how to deal with my broth-ers who are diagnosed with bipolardisorder, anxiety and attention-deficit/hyperactivity disorder (ADHD).Peter, 10, who is one of the guys in theKidshops program, has a brother witha mood disorder and he says, “some-times when my brother tries to annoyme I ignore him and he stops. It kindof feels hard to deal with my brothersometimes, but you actually have tobecause you will probably always havesomeone in your life who annoys you.”

That is one of the great thingsabout Kidshops—I know I am notalone in how I feel and every time I goto Kidshops I look forward to seeingsome of the other kids I have gottento know. Since I have been to manyKidshops sessions, I sometimes get tobe a junior leader and help with set upor with some of the games and crafts.

One of the other things that helpsme is my dog, Gypsy. When I am sadand when my brothers go haywire,Gypsy helps me through it and makesme happy. In Kidshops, we learn that

when things get bad for us there areplaces for us to go, things to do likerelaxation exercises or listening tomusic or we can talk to other kids inthe program or adults who can help us.Besides playing games and doing craftsduring Kidshops sessions, we get achance to talk about our feelings,which is a big help. At the end of eachKidshops session, we get a tool to helpus remember what we learned and toremind us of ways to get through therough times. As Peter says, “my broth-er is always going to be in my life so itis good to learn how to deal with itnow. Kidshops has helped me a lot byteaching me better ways to deal withmy brother.”

To learn more about Kidshops,contact Mary Jean Babcock, Kidshopsproject manager, NAMI Minnesota,at (651) 645-2948, ext.107 [email protected] or visit theNAMI Minnesota Web site atwww.namihelps.org.

M

Kathryn Scheele with her two brothers John (left) and Matt (right)

That is one of the

greatest things about

Kidshops—I know

I am not alone in how

I feel and every time

I go to Kidshops I

look forward to seeing

some of the other

kids I have gotten

to know.

BackgroundToday, families increasingly rely ontheir primary care providers (PCPs)to assist them with behavioral healthissues. In fact, most children withmental health issues are more likelyto visit a PCP than a mental healthprofessional (U.S. Public HealthService, 2000). A visit to a pediatri-cian’s office can be an opportunity todiscuss emotional issues with a parentand their child. Early identificationof mental health problems has thepotential to help improve long-termoutcomes and help children accesscare earlier and hopefully more readily(Williams, Klinepeter, Palmes, Pulley& Foy, 2004). Yet, while pediatriciansare faced with an increased volume ofcases related to mental health, theyfrequently under-identify mental healthproblems (Badger, Robinson & Farley,1999; Richardson, Keller, Selby-Harrington & Parrish, 1996; Stancin& Palermo, 1997; Gardner et al.,2000). In addition, most pediatriciansdo not feel responsible for treatmentor management of behavioral problems,except ADHD (Stein et al., 2008). In1999, the U.S. Surgeon General calledon pediatricians to improve screeningand referral for early-onset mental ill-ness. Today, primary care providers canplay a significant role in addressingthe mental health treatment needs ofchildren, but there is still much workto be done.

ScreeningA first step in integrating behavioraland physical health is identifying mentalhealth problems. Recently, numerousnational organizations have recom-mended the use of validated screeningtools for this purpose. Using screeningtools has been shown to increaseidentification of psychosocial issues(Brugman, Reijneveld, Verhulst &Verloove-Vanhorick, 2001; Murphy,

Arnett, Bishop, Jellinek & Reede,1992). However, pediatricians notethat the obstacles to screening aremany and include a lack of:• time available in a visit due to

productivity requirements;• resources for referral;• reimbursement for emotional health

services delivered in primary care;and

• skills to manage identified mentalhealth issues effectively.A variety of standardized and

validated screening tools are currentlyavailable for use in pediatric practice(Jellinek, Patel & Froehle, 2002). Ingeneral, they are simple to use andare based on self-report by parentsor youth. However, screens may bespecific to age and condition. Atpresent there is no “one size fits all”solution. For example, the ModifiedChecklist for Autism in Toddlers(M-CHAT) is a screening tool forautism, while the Parents’ Evaluationof Developmental Status (PEDS) is adevelopmental and behavioral screen-ing tool for children 0-8 years of age.Some validated tools are available freewhile others have an associated cost.

One ExperienceIn 2003, the Cambridge HealthAlliance (CHA) began to integratebehavioral and physical health care inits pediatric clinics. CHA is an urbanintegrated public health system servingthe communities of Cambridge,Somerville, Everett and Malden, Mass.The system has several hospitals andmultiple ambulatory care clinics. Thereare currently nine pediatric and familymedicine care sites across these com-munities. The Department of Pediatricssees more than 100,000 ambulatoryvisits a year and the population isracially and ethnically diverse. Theracial breakdown of patients is 48percent Caucasian, 19 percent African

American, 16 percent Latino, 9 percentother, 4 percent unknown and 3 percentAsian American.

We began behavioral health screen-ing for school-aged children duringtheir well-child visits in 2003 at one ofour sites. We planned to develop andrefine our process before rolling itout across CHA. We chose validatedbehavioral health screening tools, thePediatric Symptom Checklist (PSC)and the Youth-PSC, because they arewidely validated, simple to use, trans-lated into numerous languages and free(Jellineck & Murphy, 2005; Murphy,Reede, Jellinek & Bishop, 1992). ThePSC is a 35-item questionnaire thatasks parents questions about their cur-rent behavioral and emotional concernsabout their children and allows themto answer either never, sometimes oralways. The Youth-PSC is for childrenover the age of 11 and asks the samequestions from the perspective ofthe child. Topics range from sleepingproblems to feelings of sadness andanxiety. The cutoff for concern alsovaries by age group.

The process for screening andreferral was designed to ensure mini-mal demands on pediatricians’ limitedtime (Hacker et al., 2006). It was fullycarried out by existing clinic staff. Theprocess includes the following steps:1. Registration staff hand out the

paper version of the PSC at allwell-child visits.

2. Parents fill out the PSC in thewaiting room.

3. Primary care physicians score thePSC in their exam rooms with theparent and child and review the scoreand then determine a disposition.

4. Several variables from the screen(score, parental concern, counselingand disposition) are recorded in theelectronic medical record (EMR)and the screen is scanned into therecord.


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

Mental Health Screening as aComponent of Integrated Careby Karen Hacker, M.D., M.P.H., executive director, Institute for Community Health and assistant professorof medicine, Harvard.

In general, children who score pos-itively and are not currently in counsel-ing are referred to mental health servic-es. In addition, children who scorenegatively are also referredif their parents express concern aboutbehavioral or emotional problems. Ifthe provider feels it is necessary, a childcan be referred, regardless of score,counseling status or parental concern.

Access to screening data throughthe EMR has allowed us to monitorcompliance rates. It took over sixmonths to get our screening compliancerates to 70 percent of eligible children.Reasons for screening noncomplianceincluded: literacy, developmentaldisabilities and loss of papers. Todaywe have engaged all nine pediatric andfamily medicine sites in screening.

Strategies for Screening• Prepare your practice and developyour process: As with any change inpractice patterns, you will need ateam approach that involves every-one in the implementation process.Determine the process for screeningbefore you begin and decide whowill give the screening tool topatients, how it will get recordedand related issues. Additional helpis available on several Web sites.1, 2

• Determine which tools you want touse: There are many good resourcesfor screening tools and informationon tools is available online.3, 4 Youcan start with one age group andadd other tools as you become morecomfortable with the process. In thelong run, having a standardized toolshould improve efficiency in yourpractice.

• Know your referral resources: It willbe important to know when andwhere to refer children and todecide how much care managementyou want to do in your office. Forexample, many pediatricians nowfeel comfortable with a depressiondiagnosis and treatment. Managementwill require knowledge of psy-chopharmacology and regular

follow-up. While most insurers willaccept a bill from a pediatrician fora mental health visit, reimbursementis related to the complexity of thevisit, so remember to document anycounseling that you do. If youchoose to refer, make sure yourcommunication is adequate toensure that children and familiesdo not fall through the cracks.Remember, many families may notbe ready for referral and the screen-ing process may help them thinkabout their options.

• Monitor your success: It really helpsto develop reports on your screen-ing rates and determine the percentof your population that requiresadditional attention. In our prac-tices, we see about 6 percent of thepopulation screening positively, butmany are already in counseling. Anadditional 5 percent are referreddue to either parental or providerconcern even when they do notmeet the cutoff for identification.

• Addressing concerns about mentalhealth with parents: In our experi-ence, screening is a simple andefficient way to identify problemsbut it also provides the opportunityto discuss mental health concerns.First, the family has an opportunityto reflect on their child’s emotionalhealth and register their concerns.Second, the provider has an oppor-tunity to discuss the informationwith them and talk through options.There is newly emerging evidence

that brief interventions based on moti-vational interviewing5 can be helpfulin addressing mental health issues inprimary care (Wissow, 2009). Also,various integrative strategies, such asco-location of mental health providersin your practice or access to consultingpsychiatrists, can be extremely helpful.

Child mental health issues are con-sidered the “new morbidity.” There is apaucity of specialists available and theprimary care community has no choicebut to determine its role in this area.Screening tools can be the first step to

integrating behavioral and physicalservices in primary care. This integra-tive approach supports patient-centeredcare and moves us closer to the medicalhome model.

To learn more about mental healthscreening as a component of integratedcare, contact Dr. Karen Hacker [email protected].

ReferencesBadger L., Robinson H. & Farley T. (1999).Management of mental disorders in rural primarycare: A proposal for integrated psychosocialservices. Journal of Family Practice, 48, 813-818.

Brugman E., Reijneveld S., Verhulst F. &Verloove-Vanhorick S.P. (2001). Identificationand management of psychosocial problems bypreventive child health care. Archives of Pediatricsand Adolescent Medicine, 155, 462-469.

Gardner W., Kelleher K.J., Wasserman R.,Childs G., Nutting P., Lillienfield H. & Pajer K.(2000). Primary Care Treatment of PediatricPsychosocial Problems: A study from pediatricresearch in office settings and ambulatorysentinel practice network. Pediatrics, 106, 44.

Hacker K., Myagmarjav E., Harris V.,Franco Suglia S., Weidner D. & Link D. (2006).Screening for mental health in pediatric practice:Factors related to positive screens and the contri-bution of parental/personal concern. Pediatrics,118, 1896-1906.

Jellinek M., Patel B.P. & Froehle M.C.(2002). Bright Futures in Practice: Mental HealthVolume I. Practice Guide, Arlington, VA. NationalCenter for Education in Maternal and ChildHealth.

Jellineck M. & Murphy M. (2005). PediatricSymptom Checklist, Massachusetts GeneralDepartment of Child Psychiatry. Retrieved fromhttp://psc.partners.org/psc_detailed.htm.Accessed Sept. 11, 2005.

Murphy J.M., Arnett H.L., Bishop S.J.,Jellinek M.S. & Reede J.Y. (1992) Screening forpsychosocial dysfunction in pediatric practice.A naturalistic study of the Pediatric SymptomChecklist. Clinical Pediatrics, 31, 660-7.

Murphy J.M., Reede J., Jellinek M.S. &Bishop, S.J. (1992). Screening for psychosocialdysfunction in inner-city children: Furthervalidation of the Pediatric Symptom Checklist.Journal of American Academy of Child andAdolescent Psychiatry, 31, 1105-1111.

Richardson L.A., Keller A.M.,Selby-Harrington M.L. & Parrish R. (1996).Identification and treatment of children’s mentalhealth problems by primary care providers:A critical review of research. Archives ofPsychiatric Nursing, 10, 293-303.

Stancin T. & Palermo T.M. (1997). Areview of behavioral screening practices inpediatric settings: Do they past the test? Journalof Developmental and Behavioral Pediatrics, 18,183-194.

Stein R.E., Horwitz S.M., Storfer-Isser A.,Heneghan A.M., Olson L. & Hoagwood K.E.(2008). Do pediatricians think they areresponsible for identification and management



1 A Developmental Screening Toolkit for Primary Care Providers is available at www.developmentalscreening.org.2 An Integrating Developmental Screening Worksheet is available at www.commonwealthfund.org/usr_doc/Integrating_Developmental_Screening_Worksheet.pdf.3 The Bright Futures Tool for Professionals Pediatric Symptom Checklist is available at www.brightfutures.org/mentalhealth/pdf/professionals/ped_sympton_chklst.pdf.4 Information on commonly used screening tools is available at www.dbpeds.org/articles/detail.cfm?textid=539.5 Editors Note: information on motivational interviewing can be found at www.motivationalinterview.org.



of child mental health problems? Results ofthe AAP periodic survey. Ambulatory Pediatrics,8, 11-17.

U.S. Department of Health and HumanServices. (1999). Mental Health: A report ofthe Surgeon General. Rockville, MD: U.S.Department of Health and Human Services,Substance Abuse and Mental Health Services

Administration, Center for Mental HealthServices, National Institutes of Health, NationalInstitute of Mental Health.

U.S. Public Health Service. (2000).Report of the Surgeon General’s Conference onChildren’s Mental Health: A National ActionAgenda. Washington, D.C.

Williams J., Klinepeter K., Palmes G.,

Pulley A. & Foy J. (2004). Diagnosis and treat-ment of behavioral health disorders in pediatricpractice. Pediatrics, 114, 601-606.

Wissow L.S., Gadomski A., Roter D., et al.(2008). Improving child and parent mentalhealth in primary care: a cluster-randomized trialof communication skills training. Pediatrics, 121,266-275.

Strategies to Support the Integration of Mental Health intoPediatric Primary Care

An issue paper developed in2009 by the National Institutefor Health Care ManagementFoundation that focuses onhow mental health care can befully integrated into pediatricprimary care. It reviews infor-

mation on mental health programs, practices and guidelinesand discusses strategies primary care providers and healthplans can use to improve the early identification of mentalhealth conditions and treatment for children in primarycare. To access the issue brief, visit www.nihcm.org.

Best Beginning: Partnerships between Primary Health Careand Mental Health and Substance Abuse Services for YoungChildren and Their Families

An online resource createdin 2005 by the GeorgetownUniversity Center for Childand Human Development thatfeatures eight innovativemedical home practices thatintegrate behavioral health

screening for the whole family, facilitate referrals tocommunity services and offer follow-up care. To accessthe resource, visit http://gucchd.georgetown.edu(Click “Products and Publications”).

Improving Mental Health Services in Primary Care:Reducing Administrative and Financial Barriers to Accessand Collaboration

A joint position paperpublished in 2009 by theAmerican Academy ofPediatrics and the AmericanAcademy of Child andAdolescent Psychiatry thataddresses the administrative

and financial barriers that primary care physicians andchildren’s mental health professionals face in providingbehavioral and mental health services to children andadolescents. To access the position paper, visitwww.aap.org/mentalhealth.

Guidelines for Adolescent Depression—Primary CareA set of guidelines developedin 2007 by the Resource forAdvancing Children’s Health(REACH) Institute for themanagement of depression inprimary care. The guidelinesaddress issues regarding the

screening, diagnosis and treatment of depression in youth.The REACH Institute has also created a tool kit for primarycare physicians to support them in implementing theguidelines. To access the guidelines and tool kit, visitwww.thereachinstitute.org (Click on “Resources” andthen “GLADPC Toolkit”).

Recommendations on Depression Screenings for AdolescentsThe U.S. Preventative Services Task Force released recom-mendations in 2009 urging physicians across the UnitedStates to perform routine depression screenings foradolescents between the ages of 12-18 when appropriateservices are in place to ensure accurate diagnosis, treatmentand follow-up care. To access the recommendations, visitwww.ahrq.gov/clinic/uspstf/uspschdepr.htm.

Under One Roof: Primary Care Models that Workfor Adolescents

A report released in 2007by The National Alliance toAdvance Adolescent Healththat describes a comprehen-sive, multidisciplinary modelof physical, behavioral andreproductive health care in

different health care settings. The report describes thefinancing challenges associated with integrated care andprovides strategies to obtain additional funding support.To access the report, visit www.incenterstrategies.org(Click on “Publications” and then “Reports”).

Resources on the Integration of Mental Health and Primary Care


S T A T E N E W S

The Whole Health Initiative:Integrating Mental Health IntoCommunity Health Careby Sherri Wittwer, M.P.A., executive director, NAMI Utah

AMI Utah has had astrong partnership withIntermountain Healthcareand their Mental HealthIntegration program for many

years. As a result of the success of thispartnership and the program, therewas great interest in adaptingIntermountain Healthcare’s modelfor the community.

From that, the Whole HealthInitiative was born. The Whole HealthInitiative project is a communitycollaboration driven by families andindividuals living with mental illnessthat grew out of the recognized needfor mental health services for thosewho are underinsured or uninsured.NAMI Utah leads this project and isthe fiscal agent. Other communitypartners who provided expertise,services or funding to develop thisproject include: Salt Lake County,Intermountain Healthcare, the UtahState Division of Substance Abuse andMental Health, Valley Mental Health(the local mental health authority),the Utah State Health Department andthe University of Utah Social ResearchInstitute.

The project was developed for twoprimary reasons:• to integrate mental health and

physical health care in a single site;and

• to deliver behavioral health servicesin an innovative and cost-effectivemanner that is driven by familiesand individuals living with mentalillness.The Whole Health Initiative inte-

grates a mental health team into exist-ing health clinics to provide medicalhomes with the necessary support to

meet the physical and mental healthcare needs of patients. The team con-sists of a psychiatric advanced practiceregistered nurse (APRN), a licensedclinical social worker (LCSW) and acare manager who is also a NAMImentor. The team members workclosely with frontline staff, medicalassistants, physicians, patients andfamilies to provide mental andphysical health care to clinic patients.

The project is located at threelow-income community health centers.At these clinics, patients are universallyscreened to determine whether acomprehensive mental health assess-ment may be needed. Physicians reviewthese screenings and ask follow-upquestions regarding patients’ mentaland physical health.

Patients with a positive screen aregiven a comprehensive packet contain-ing standardized instruments providedby Intermountain Healthcare to detectthe need for mental health services.When mental health conditions areidentified, patients receive behavioralhealth services based on severityof need.

Patients with mild symptomsreceive an evaluation and treatmentfrom the health clinic physician and amedication consultation is also madeavailable from the APRN. Patients withmoderate symptoms are also referred

for immediate short-term psychotherapyservices from the LCSW team memberor are referred to community providersfor longer-term treatment. Those whoare insured are assisted in findingtreatment according to their insurance.Patients with severe symptoms arereferred to the community mentalhealth center for specialty mentalhealth care. The care manager/NAMImentor assists patients by providing

information about NAMI programs andreferrals to other community servicesfor families.

True integration of health andmental health services in a primarycare setting improves access to mentalhealth services for families in a cost-effective manner. The primary caresetting is familiar to families andstigma is less of a barrier. The focuson early identification and earlyintervention is key to averting crisesand provides a positive approach inaddressing a child’s health andmental health.

To learn more about NAMI Utah’sWhole Health Initiative, contact SherriWittwer at [email protected].

NTrue integration of health and mental health

services in a primary care setting improves

access to mental health services for families

in a cost-effective manner.


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

pproximately two-thirds ofwomen and over one-halfof men living with mentalillness are parents (Nicholson,Larkin, Simon & Banks,

2001). Research suggests that childrenliving with a caretaker with mental ill-ness would benefit from psychosocialinterventions to reduce the negativeimpact of the caretaker’s symtomologyon child development (Silverman, 1989).

In 1999, two adult children ofparents living with mental illnessdeveloped the Positive Connectionsprogram. Their vision was to supportfuture generations in combating thepersonal and isolating effects of livingin an often unstable and unpredictableenvironment. This vision led to collab-oration between three communityorganizations: NAMI of GreaterToledo, Big Brothers Big Sisters ofNorthwestern Ohio and UnisonBehavioral Healthcare.

When Positive Connections wasoriginally created, it was a 10-week,psycho-educational program solely forchildren who have a parent living witha mental illness. It focused on helpingchildren understand major mentalillness and develop positive copingstrategies within a nonjudgmental,supportive environment. Children whosuccessfully completed the programwere matched for a minimum of sixmonths with a trained mentor whoprovided ongoing positive adultinteraction. Positive Connections wasembraced by the community, which hasresulted in approximately 25 childrenbeing helped by the program eachyear for the past 10 years.

Today, Positive Connections contin-ues to be a collaborative effort betweenNAMI of Greater Toledo and BigBrothers Big Sisters of NorthwesternOhio. It provides education andsupport by helping children produce atangible “tool box” of information andcoping strategies to be called upon asneeded to assist both the child and thefamily in managing their environmentas well as their thoughts, feelings and

actions. The program provides individ-ualized and often interactive activitiesto facilitate learning and applicationof information.

We continue to work within theoriginal vision of the program; however,we have expanded it to include childrenwho are struggling with their ownmental, emotional or behavioral diffi-culties while still addressing the specialissues faced by those living with aparent with mental illness. Localsurvey data supports this expansion.Caretakers reported in the survey thatlittle assistance was available to helpchildren understand their own mentalillness diagnosis or a caretaker’s mentalillness and related difficulties. Datafrom the survey also indicated thatthere were no programs that providedboth caretaker and child support,which parents identified as a majorfactor to facilitate increased familyparticipation in programs. As a result,the NAMI Child and AdolescentNetwork support groups for adultsare now facilitated at the same time as

Positive Connections for youth to helpmeet the identified needs of parents.This allows for simultaneous learningand support to promote family discus-sion about symptomology, treatmentand coping skills.

Our expansion to include childrenliving with a mental illness and parentsupport groups has provided us withsome increased challenges in meetingthe more difficult needs of thesepopulations and has demanded thatthe staff be more creative. Despite ourchallenges, our program has grownexponentially, which we believe indi-cates that our programmatic changeswere needed and are filling what wereonce unaddressed pieces of family carewithin the current system. We arecurrently evaluating how to incorpo-rate some of the more difficult topicsoften faced by many who strugglewith mental illness, such as suicideprevention and using drugs andalcohol as coping mechanisms.

Positive Connections is a fluidprogram that works to conscientiouslyand creatively meet the ongoing,self-identified needs of our communitywhile remaining true to the individual-ized spirit of each child and family.We continue to grow and changeas additional needs are identified.We believe programs such as ours areneeded nationally to help familiesthrive and grow despite the challengesthey face.

To learn more about PositiveConnections, contact Stephanie Souzaat [email protected].

ReferencesNicholson, J., Larkin, C., Simon, L. & Banks,S. (2001). The prevalence of parenting amongadults with mental illness. Center for MentalHealth Services Research, Department ofPsychiatry, University of MassachusettsMedical School.

Silverman, M.M. (1989). Children ofpsychiatrically ill parents: A prevention perspec-tive. Hospital and Community Psychiatry, 40(12),1257-1265.

Positive Connectionsby Stephanie Souza, M.B.A, Positive Connections program coordinator, NAMI of Greater Toledo, Ohio

A

Depressed Dogby Dominique, Age 16

I Know What Mental Illness Isby Zach, Age 10


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.

3803 N. Fairfax Dr., Suite 100Arlington, VA 22203-1701(703) 524-7600www.nami.org

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he American Academyof Pediatrics (AAP) TaskForce on Mental Healthis developing multipletools and materials to

assist primary care pediatriciansin screening, diagnosing andmanaging the most commonmental health conditions withintheir practices.

The AAP Task Force onMental Health was developed in2004 in response to the growingneed to address child and ado-lescent mental health concernsin the primary care setting and because of the severenational shortage of child and adolescent psychiatrists.The AAP is developing a tool kit, along with trainings,educational resources and publications on the integration

of children’s mental health intoprimary care. These resourcesinclude information for pediatri-cians, physicians, families andpolicymakers.

The task force also supportscollaborative projects betweenmental health professionals andprimary care physicians at thecommunity level. The projectsfocus on improving mental healthreferral services, developingtelemedicine programs, creatingco-location models, developingeffective mental health screening

initiatives and much more.To learn more about the AAP Task Force on Mental Health,

visit their Web site at www.aap.org/mentalhealth.

The American Academy of Pediatrics Task Force on Mental Health

T

www.aap.org/mentalhealth

nami beginnings - fall 2009

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