a publication dedicated to the young minds of america from the nami...

Winter 2012 • Issue 19

Yo u t h Vo i c e • A s k t h e D o c t o r • Fam i l y Vo i c e

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

Achieving School Success

StrengtheningChildren’s MentalHealth throughSchool-basedPrograms

Youth Voice: An Open Letter to Teachers

2 | Nami Beginnings | Issue 19 | Winter 2012

C O N T E N T S

NAMI Beginnings is published quarterlyby 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 and Brendan McLean,copy editorsJoe Barsin, art director

Guest Contributors: Matt Cohen, J.D.Paloma DeeChristi Farmer Stephen Grcevich, M.D. Dawn KebertMark Sander, Psy.D.Savannah T.

Staff Contributors:Darcy Gruttadaro, Dana Markey andAnne Diehl NAMI, the National Alliance on Mental Illness, is thenation’s largest grassroots mental health organization dedicated to building better lives for the millions ofAmericans affected by mental illness. NAMI advocates for access to services, treatment, supports and researchand is steadfast in its commitment to raising awarenessand building a community of hope for all of those in need.

Stock photos used in this publication are not meant toindicate any particular attitude or opinion on the part of those whose images are being used and are notintended to indicate an endorsement by the subjects.

www.nami.orgTwitter: NAMICommunicateFacebook: www.facebook.com/OfficialNAMI NAMI HelpLine: (800) 950-6264

© 2012 by National Alliance on Mental Illness. All rights reserved.

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

n December 2011, U.S. Sen. Harkin(D-Iowa) introduced The KeepingAll Students Safe Act (S. 2020).U.S. Rep. George Miller (D-Calif.)introduced similar legislation in

the House (H.R. 1381). These billsimpose sharp restrictions on the use ofrestraint and seclusion in our nation’sschools. NAMI strongly supports thesebills and urges swift action to passthem. Currently, there are no federallaws that regulate the use of restraintand seclusion in schools. State laws inthis area vary widely.

Physical restraint and seclusionhave resulted in physical injury, psychological trauma and death to children in public and private schools.The inappropriate and harmful use ofrestraint and seclusion has dispropor-tionately impacted students with disabilities, including those with

mental illness. Media stories aroundthe country have documented many of these tragic cases.

You can learn more about this legislation and this issue through thefollowing resources:• Visit Thomas.loc.gov to read the

legislation (search by bill numbers S. 2020 and H.R. 1381)

• Review the Government Accountability Office (GAO) report on this issue at www.gao.gov/products/GAO-09-719T

• Review the National Disability Rights Network report, School is Not Supposed to Hurt, atwww.ndrn.org (Click on “Issues,” “Abuse and Neglect,” and “Restraint and Seclusion”)

• Review Section 4.3 of NAMI’s PolicyPlatform at www.nami.org (Click on“Inform Yourself,” “Public Policy Issues” and “NAMI Policy Platform”)

Act NowIt is critical for all U.S. Senators andHouse Representatives to hear fromyou about the importance of moving S.2020 and H.R. 1381 forward to protectchildren from these harmful practices.Advocates are strongly encouraged tourge U.S. Senators and HouseRepresentatives to support immediatepassage of S. 2020 and H.R. 1381, bothtitled The Keeping All Students SafeAct. Call them by using the CapitolSwitchboard at (202) 224-3121 andemail them by using NAMI’s LegislativeAction Center at http://capwiz.com/nami/home. Thank you!

2 POLICY ALERTSCapitol Hill Watch

3 Strengthening Children’s MentalHealth Services through School-basedPrograms

6 Left Behind, Left Out or Kicked Out:Strategies for Protecting Children’s Rights in School

9 YOUTH VOICE

10 ASK THE DOCTOR

12 FAMILY VOICE

13 STATE NEWS

14 AFFILIATE NEWS

15 BOOK REVIEW

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

Urge Congress to Act to End Abusive and DeadlyUse of Restraint and Seclusion in Schools

I

F E A T U R E

Winter 2012 | Issue 19 | Nami Beginnings | 3

Strengthening Children’sMental Health Services throughSchool-based Programsby Mark Sander, Psy.D., Hennepin County/Minneapolis Public Schools, Tom Steinmetz, Washburn Center forChildren, Anna Lynn, Minnesota Department of Human Services, Glenace Edwall, Minnesota Department ofHuman Services and Marcia Tippery, Minnesota Department of Human Services

Introduction and Background School success and positive mentalhealth are critical for later success inlife. The dropout rate for students living with serious mental illness isapproximately twice that of other students. Mental health and schoolsuccess are closely related sinceuntreated mental health issues can besignificant barriers to learning. One infive children has a diagnosable mentalillness, yet 70 to 80 percent do notreceive treatment or receive inadequatelevels of care. The need to improveaccess to mental health services isurgent. Fortunately, schools providesignificantly improved access to students and families. Schools are anideal place for mental health promo-tion, prevention and early interventionactivities such as Positive BehavioralInterventions and Supports (PBIS) andsocial emotional learning. When students have a more serious mentalillness, research has shown that havinga licensed mental health provider on-site at a school can dramaticallyincrease these students’ access to andparticipation in needed mental healthservices and supports.

Nationally, the school mental healthmovement has grown over the last 15years. Minnesota has had more than 20years of school and mental health col-laboration, fostered by an investmentof state funds in 2007 as part of largermental health reform legislation.Minnesota’s school-based mental healthefforts include 21 School-LinkedMental Health (SLMH) grant programsserving urban, suburban and ruralareas. These programs serve 63 coun-ties, about 200 school districts and

more than 550 schools. The purpose of these programs is to increase accessto children’s mental health services inschool and community settings.

Additionally, Washburn Center forChildren has been providing services in Minneapolis Public Schools (MPS)since 2005 through a partnership withHennepin County and MPS. Currently,Washburn provides services in sevenschools in the Minneapolis PublicSchool District as well as ten suburbanschools in the nearby Bloomington andEden Prairie School Districts.

As the provider in these schools,Washburn Center for Children collabo-

rates with school staff and parents tohelp identify children who are strug-gling with mental health issues and toensure that they receive assessment andtreatment services in a timely manner.Services are available and accessible toall children and families, whether theyhave health insurance or not, due tostate and county grants.

Washburn clinicians provide a com-prehensive diagnostic assessment and arange of therapeutic, care coordinationand consultation services. These clini-cians partner with teachers and parentsto help them effectively work with achild who is experiencing social, emotional and behavioral problems, toprovide consultation so parents andteachers understand mental health

issues and interventions better and to coordinate services with other professionals serving the family. Schoolstaff members are able to consult withclinicians and receive guidance on howto provide an environment that is conducive to a student’s learning andhow to respond when issues arise.

How the Program Works In Minnesota, school-based mentalhealth programs integrate a broad continuum of mental health servicesand supports into the schools by locating a mental health professional atthe school and partnering with student

support staff already in the schools.Through a contractual relationshipwith the school district, a communitymental health agency places a licensedmental health professional at eachschool participating in the program.This professional provides a range ofservices on-site at the school from prevention and early intervention(including teacher training and consultation) to diagnostic evaluationand therapy.

The school-based mental healthprograms are designed to provide bothmental health services and ancillarysupports (e.g., teacher consultation,care coordination, classroom presenta-tions). Most of the clinical services are

continued on page 4

Mental health and school success are closely related since untreated mental health issues can be significant barriers to learning.

funded by health insurance reimburse-ment. The financial model is based on maximizing reimbursement fortreatment through families’ healthinsurance. Program leaders have foundthat up to two-thirds of their costs canbe captured through health insurancereimbursement and the county payingfor the uninsured, leaving one-third ofthe funding needed from grants andother funding sources. Work continueson collaborative financing and long-term sustainability strategies thatbraids health insurance reimbursementand county, state and school districtfinancial support to create a strongfinancial base for the programs.

Brief Portrayal of Data Outcome data has been critical tobuilding school-based mental healthprograms across Minnesota. Programleaders have used data to guide thedevelopment and implementation oftheir programs as well as to assess individual student improvement and indicators of overall program success.

Bringing mental health providersinto the schools to provide servicesoffers a range of benefits, including:• Reduced barriers to learning, both

for children living with mental illness and their classmates

• Increased accessibility to mental health services and supports (especially for underinsured and uninsured children)

• Improved functioning of children living with mental illness

• Reduced symptoms• Reduced time spent out of class• Reduced time away from work

for parents• Eliminated transportation barriers• Improved consultation for teachers

to support children in the classroom• Reduced truancy and suspension

rates

In Minnesota, from July 2008 toJune 2010, more than 8,400 studentsin 63 counties have, with parental permission and involvement, been ableto access mental health services in their schools through our state’s SLMHprograms. Data from the SLMH programs show that between 46 to 59percent of students accessed mentalhealth services for the very first time.Many children with serious mentalhealth needs were first identifiedthrough the SLMH programs, including45 percent of children who met the criteria for serious emotional distur-bance (3,749 children total). For students from cultural and ethnicminority communities, school-basedaccess to mental health services was

especially important. Overall, studentsof diverse racial/ethnic backgroundswere significantly more likely to accessmental health services for the first timethan Caucasian students (58 percentversus 52 percent). In particular, ahigher portion of Asian American (69 percent) and African American (56 percent) students accessed servicesfor the first time compared toCaucasian students (52 percent).

The Strengths and DifficultiesQuestionnaire (SDQ) is a behavioralhealth questionnaire that gauges theperspectives of the child, parent andteacher. The SDQ is useful clinicallyand has been reported by SLMH clinicians to be an important tool to discuss treatment progress withteachers and parents. SLMH studentswho had SDQ subscale scores in theabnormal range made significant movement to borderline or normalrange scores from all raters. However,the greatest portion of student move-ment from abnormal to normal andborderline was for prosocial behaviorsand emotional symptoms.

The MPS program has collecteddata since the beginning of the pro-gram in 2005 and trends have beenfairly consistent over the years andsimilar to SLMH data. The MPS datahas shown that about 85 percent ofstudents were seen at least once face to


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continued from page 3

The American Foundation for Suicide Prevention and the Suicide PreventionResource Center released a comprehensive toolkit, After a Suicide: A Toolkit forSchools. This resource provides step-by-step guidance on how schools shouldrespond to a suicide.

The toolkit provides information onhow schools should communicate withparents, students and the media whena suicide occurs and how to best pre-vent suicides. The toolkit includessample press releases, best practices forresponding to crises and how schoolscan help students cope, work withtheir community, use social media andmove forward after a suicide happens.

To access the toolkit, visitwww.sprc.org/library/AfteraSuicideToolkitforSchools.pdf.

After a Suicide: A Toolkit for Schools

face by a mental health professional,more than 70 to 85 percent of studentswere seen within two weeks and 50 to65 percent of these students neverreceived mental health services before.Program data also documents that students are receiving an appropriatelevel of treatment, averaging 15 face-to-face contacts during the year.

The MPS program has helped stu-dents improve their mental health andeducational outcomes over the pastseveral years. Both teachers and parentsreport improvements in students’ men-tal health on the SDQ, which is similarto the outcomes reported in the SLMHprograms. MPS program data also identified a decrease in school suspen-sions and an increase in attendance forsome students. In addition, principalsreported that they believed the programsignificantly reduced office referralsand student suspensions.

School-based mental health programsare reaching children at critical timesin their lives and are reaching childrenwith mental health symptoms that aremore obscure than disruptive behaviorsin the classroom.

Approximately 79 percent of SLMHstudents began services with moderatemental health service needs, typicallyrequiring outpatient services and briefinterventions. Conversely, 19 percent ofstudents in the SLMH program startedservices with needs consistent withintensive services, case managementand even inpatient level of care. Amongthe students with higher needs, 57 percent moved to a lower, less inten-sive level of care. Many students presented with low overall serviceneeds but one or two areas of acuteneed such as day-to-day functioning, a stressful living environment or a co-occurring substance use disorder.For SLMH children with severe impair-ment in one of these areas, between 66 to 80 percent moved to minimal ormoderate level of need in that area.These changes occurred in an averageof seven months of service.

Lessons LearnedRecognizing that no one system canmeet the mental health needs of youthalone, communities, schools and

mental health providers created programs to develop services whenthey did not exist and better alignmental health services and supportswith schools. Establishing strong relationships with schools and parentsis critical to the success of the SLMHprograms.

The challenges faced by the 21SLMH providers across the state are varied, related to the size and geographic location of the school they serve.

As a provider in the urban setting of Hennepin County, Washburn Centerfor Children has encountered one lesson that is undoubtedly key for all

school-based mental health programs:investing in comprehensive planningwith all key stakeholders to create clearagreements about boundaries, roles,expectations and policies among thevarious organizations involved, particu-larly between providers and school personnel. For example, policies relat-ed to data privacy, mandated reportingand parental consent may be differentacross systems and it is crucial to discuss these differences at the verystart of the collaboration so a clearprocess can be defined. MPS andHennepin County invested and sup-ported this type of initial planning andcollaboration and it benefited the project enormously.

Another challenge WashburnCenter for Children has encounteredthrough its school-based mental healthprogram is supporting services for thelarge number of families needing services who are uninsured or underin-sured. This financial challenge is moreprominent in the school-based mentalhealth program than in Washburn’sother therapeutic programs due to the higher percentage of uninsuredchildren served and families with largedeductibles and co-pays. Since one goal

of bringing mental health services intothe school setting is to ensure that allfamilies have access to services theirchild needs, providers must workproactively with uninsured/underin-sured families to ensure that servicesremain available and affordable for allchildren who need them. Ultimately,this fiscal pressure necessitates publiccontributions to guarantee sustainability.

Looking Toward the FutureSchool-based mental health programscan significantly increase access toservices and supports and help sustaineffective engagement in treatment,especially for families who in the past

have had difficulty accessing the com-munity-based mental health system.School-based mental health programs—when done well—are based onstrong partnerships and provide theopportunity to leverage the expertiseand resources of several major systemsthat touch children’s lives to helpachieve the best possible outcomes forchildren.

This important work can only besustained through strong effective partnerships that have, at their core,the shared vision of school-based men-tal health and a fierce commitment tothe well-being of children and theirfamilies. School districts, mental healthproviders, health plans and county andstate governments all have a role. Noone organization or system can do this work alone.

To learn more about the Minneapolisand Hennepin County school-basedmental health programs, contact Dr. Mark Sander at [email protected]. To learn moreabout the Department of HumanServices’ state-funded grants, contact Dr. Marcia Tippery [email protected].

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Establishing strong relationships with schools and parents is critical to the success of the SLMH programs.

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hildren with emotional, socialand behavioral conditionsexperience unique challengeswithin public schools. Theirdisabilities impact their

behavior and academic functioning andmake them more likely to be subject toschool discipline even if their behavioris a result of their disabilities. Manychildren with these emotional, socialand behavioral issues are entitled tospecial services and protections withinpublic schools through two laws, theIndividuals with Disabilities EducationAct (IDEA), the law governing specialeducation, and Section 504 of theRehabilitation Act of 1973. IDEA is afunding statute that requires all statesto comply with the federal special edu-cation regulations. Section 504 is a civilrights statute requiring all recipients offederal funds to provide non-discrimi-natory services, including reasonableaccommodations.

Both IDEA and Section 504 have arequirement called “Child Find,” whichrequires schools to identify all childrenaged 3 to 21 who are suspected of having a disability, including a mentalillness. Because mental illness is some-times less visible than some other disabilities, the Child Find rules arevery important in mandating thatschools assess children having behav-ioral, emotional or social problems. As part of the Child Find requirement,a parent or member of the school staffmay also refer a child for evaluation for special education or Section 504services.

When a child is referred for evalua-tion, the school must first obtain writ-ten parent consent before conductingthe evaluation. In addition, the schoolmust inform parents if the school doesnot believe that an evaluation is appro-priate and must tell parents the reasonthe evaluation is being refused and thatparents have the right to challenge the refusal. When a school and parentagree that an evaluation should be conducted, it must include a variety ofdifferent evaluation procedures andmust be non-discriminatory. The IDEAnow requires that schools evaluate achild in a manner and form which:• Yields accurate results• Identifies what the child knows

and can do• Assesses the child’s developmental,

functional and academic progress

These requirements are particularlyimportant for children living with men-tal illness since it makes clear that theymay be entitled to services and legalprotections for these issues, even if theissues are not directly impacting theiracademic performance, but are affectingother areas of their development andfunctioning at school.

Several of the IDEA disability cate-gories may be applicable to childrenliving with mental illness, including thecategories of “emotionally disturbed”(ED) and “other health impaired”(OHI). In order to be eligible underthe ED category, a child must meet oneof the following criteria:

Left Behind, Left Out or Kicked Out: Strategiesfor Protecting Children’sRights in Schoolby Matt Cohen, J.D., Matt Cohen and Associates, special education, disability rights and human services law

CThe IEP mustaddress a student’sdevelopmental andfunctional needs,based on presentlevel of performanceand measurablegoals and objectives.

F E A T U R E


• Inability to learn due to emotional factors

• Inability to build or maintain interpersonal relationships

• Inappropriate types of behavior or feelings under normal circumstances

• General pervasive mood of unhappiness or depression

• Physical symptoms or fears

Furthermore, the condition must be present over a long period of time toa marked degree and must adverselyaffect the child's educational perform-ance (including non-academic schoolperformance). ED eligibility is based on the child’s general functioning inschool, social relationships, ability tocomplete work or ability to conform toschool rules and classroom expecta-tions. ED includes both aggressive-externalized behaviors and internalizedbehaviors.

Children with behavior challengesmay also be eligible for special educa-tion based on having attentiondeficit/hyperactivity disorder (ADHD),tourette syndrome, bipolar disorder orother health conditions that causebehavioral symptoms. The OHI criteriarequires that the student display limited strength, vitality or alertness,including heightened alertness to environmental stimuli that results inlimited alertness in the educational setting and adversely affects education-al performance.

All IDEA eligibility categoriesrequire that a student meet criteria fora specific disability category thatadversely affects educational perform-ance and requires special educationintervention, including specializedservices in the regular classroom. If thestudent meets the criteria for eligibilityfor special education, the student isentitled to a Free Appropriate PublicEducation (FAPE). A student’s specialeducation program is defined by thecontent of his or her IndividualizedEducation Program (IEP), which iden-tifies the special education services andsupports that he or she needs to stay inschool and learn. These services andsupports should be provided in theleast restrictive environment. FAPErequires necessary services, but notnecessarily the best services, so it isimportant for parents and clinicians to

focus on what the student needs andwhy, rather than on what would beideal or desirable.

While a student should be based inthe regular classroom whenever possi-ble, the student may also be entitled toservices in a specialized classroom, atherapeutic day school or even a resi-dential placement. The student is alsoentitled to receive related services thatare necessary for them to benefit fromtheir education, including counseling,social work, parent training, positivebehavioral supports, social skills train-ing, use of an aide, positive reinforce-ment systems, medication administra-tion and any other non-medical servic-es necessary for the child to benefitfrom education.

Some useful additional strategies for students living with mental illnesscan include:• Training programs for staff and

students• Monitoring strategies• Services to address the academic

consequences of emotional and behavioral problems

• A caring/trusted adult or peer buddy to provide support

• Adjusted class schedules and extended time for homework and tests

• Possible homebound tutoring plans as needed

• Planning for homework backup plans

Parents have a right to participate in the IEP process. The IEP must bereviewed at least annually or moreoften if the parents or school request it.The IEP must address a student’s devel-opmental and functional needs, basedon present level of performance andmeasurable goals and objectives.

The IEP must be based on peer-reviewed research to the extent possi-ble and, for children with social orbehavioral issues, should include consideration of positive behavioralinterventions and supports as well assupports the staff need (e.g., trainingon behavioral management or access toa behavioral consultant). If a child ishaving behavioral issues, the schoolshould consider conducting aFunctional Behavioral Analysis (FBA),which helps to examine problembehaviors, and developing a BehaviorIntervention Plan (BIP), whichdescribes services and supports to helpa child improve his or her behavior. If astudent with an IEP is being suspendedfor more then ten days, the schoolmust conduct a FBA and must developa BIP.

Positive behavioral interventionsthat can be provided by schools andcan be included in a BIP include thefollowing:• Exceptions to discipline codes• Counseling• Positive re-enforcement systems• Accommodations to meet the

individual needs of the student• Behavioral and social skills

training• Staff support and/or one-on-one

aides• Use of the IEP process to clearly

identify student’s behavioral challenges and needs

• Building a hierarchy of positive behavioral supports and interventionsinto the IEP

• Limiting the use/availability of restrictive/punitive/exclusionary measures

• Writing behavioral goals• Finding a trusted ally in the school

Matt Cohen, J.D.

continued on page 8

• Training for staff about the child’s condition and about proper intervention

• Promoting positive behavioral support school-wide

Section 504 is a much less detailedlaw that provides protection from discrimination for children and adultswith disabilities. A child is entitled tothe protection of Section 504 if he orshe has an identified physical or mental disability that substantially limits a major life activity, such aslearning, concentrating, thinking orsocial interaction. Unlike IDEA, a child can qualify for the protections ofSection 504 if he or she requires special education or related services.Furthermore, Section 504 has no categories or criteria for a specific type of disability or label.

Although many people are unawareof it, Section 504 not only requires the provision of “reasonable accommo-dations,” but also requires the provi-sion of other services necessary for astudent to receive FAPE. While theSection 504 definition of FAPE issomewhat different than that underIDEA, it can also include specializedinstruction and/or related services as

well as accommodations. Many studentswho do not meet the criteria for eligibility for IDEA services may still beentitled to the services and protectionsof Section 504. In fact, if a child isevaluated for special education servicesand found not eligible, the schoolshould also consider whether theymeet the criteria for Section 504.

There are many advantages to both IDEA and Section 504 eligibility.Parents should learn as much as theycan about the two laws, so they are sure that they and the school aremaking the best choice as to which law applies to the student.

Web-based Resources on IDEA andSection 504• www.mattcohenandassociates.com• www.disablethelabels.blogspot.com• www.nami.org/caac• www.ndrn.org• www.nichcy.org• www.copaa.org

More in-depth information about this topic is available in Matt’sbook, A Guide to Special EducationAdvocacy: What Parents, Advocates and Clinicians Need to Know. To order a copy, email Matt Cohen at [email protected].


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continued from page 7

Parents should learn as much asthey can about the two laws, so they are sure that they and theschool are makingthe best choice as to which law applies to the student.

www.disablethelabels.blogspot.com

www.nami.org/caac

www.ndrn.org

www.copaa.org


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

Editor’s Note: Savannah wanted to make a contribution to our magazine so she chose to speak to the school professionals in her life. We greatly appreciate her wonderful letter that captures the voice of so many youth across our nation.

Dear teachers and staff members,

I, Savannah T., am writing this letter to helpyou understand me a little better. This is aplea for your compassion, understanding andpatience. I understand that you cannot knowwhat no one has told you. This is very difficult for me to explain since I am only 14 years old and do not understand most ofit myself. Please do not mistake my mentalillness as a way for me to get out of doingmy work because I really do want to do well in school andin life. Being a teenager is hard enough and worse with amental illness.

I was born with a mental illness. This is an illness of the brain and body. My illness affects the way I think, hear,feel and behave. When I say that my illness affects the way I think, feel, hear and behave, I should offer more explana-tion. Let me start with the fact that I may or may not hearyou. Sometimes when you are speaking, there are other voices in my head or a roaring noise and your words justseem like mumbo jumbo. I have to try and clear the othervoices so I can get what you are saying. Sometimes it seemsas though you are speaking backwards or writing backwards.It takes me awhile to get it or sometimes I just never get it.Also, when I read, the words are all scrambled and mangledor I see them backwards. I know that you might think that Iam just clowning around in your class. I want you to knowthat I have the utmost respect for you and your classroom.These effects are sometimes very difficult for me to deal with and I just want to shut down and give up (since I amfrustrated). It seems as though everyone is saying meanthings about me.

I am very sorry if the effects of my illness have made it difficult for you to teach or understand me. However, Iwould like to take this time to thank you for being greatteachers. I know it must be very stressful to deal with usteenagers and the period of life that we are in. Most childrenliving with a mental illness never get the treatment that weso desperately need. We just get labeled as bad, defiant,

rebellious and/or disrespectful because ourillness goes unrecognized. Most of the time,we are too ashamed or embarrassed to saythat we have serious learning problems. Wesometimes choose negative behaviors andmake bad choices to cover up the fact thatwe do not learn the same way others do.

We need your help and our parents’ helpto recognize our cry for help. Our biggestfear is that we will be laughed at or calleddumb. Most of the time, we are not eventreated for our mental illness until after theage of 18. By that time, we have struggledso much in school or struggled to graduate(if we graduate) and we cannot go any fur-ther than drugs, child welfare, jail or death.I choose not to take that path. Therefore, Iwant to be a part of you learning about my

illness. This is an illness that I will have to live with for therest of my life. My goal is not to use it as a handicap, but tolearn how to conquer my negative behaviors, the out-of-place feelings I have, the way I learn, my frustration, andmost of all, to clear the voices I hear. I also want to learngood coping skills.

Learning about my illness may help you to understandsome of the things I go through. I am taking the time, withthe help of my mother, to learn how my brain works. Myother goal is to understand my own illness so that I mightbe able to help other children living with mental illness, but I have a long way to go before I get there.

Please understand I am not trying to disrupt your class.Understand that I need you to help me accomplish mydreams and goals. You are a gift from God to my learning.Know that I want to do well and I need your help andunderstanding.

Sometimes I get angry that this has happened to me butthen I have to accept that it did happen to me. With the support of my mother, my teachers, my church, my doctorsand my saxophone, I know I will be okay.

Thank you for your support and compassion and, mostof all, for taking the time to read my letter to you. Yourunderstanding will make the path to reaching my goals somuch easier.

Thank you,Savannah T.

A Plea for Compassion, Understandingand Patienceby Savannah T., age 14

Savannah T.


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

Key Ministry: Welcoming Youth andTheir Families at Churchby Stephen Grcevich, M.D., president, Key Ministry and child and adolescent psychiatrist in private practice in Chagrin Falls, Ohio

ey Ministry believes it is notokay for youth living withmental illness and their families to face barriers toparticipation in worship

services, educational programming and service opportunities availablethrough local churches.

The church represents an area ofAmerican culture in which a lack ofunderstanding of the causes and theneeds of families impacted by mentalillness pose a significant barrier to fullinclusion. A study published recentlyby investigators at Baylor Universityexamined the relationship betweenmental illness and family stressors,strengths and faith practices amongnearly 5,900 adults in 24 churches representing four Protestant denomina-tions.

The presence of mental illness in a family member has a significant negative impact on both church atten-dance and the frequency of engagementin spiritual practices. When asked whathelp the church could offer families,the need for support for mental illnesswas ranked second out of 47 possibili-ties by the 27 percent of families surveyed who are impacted by mentalillness, but forty-second by unaffectedfamilies in the church.1

Key Ministry was established tohelp connect families of children with“hidden disabilities”—significant emotional, behavioral, developmentalor neurologic conditions lacking out-wardly apparent physical symptoms—with local churches. The hidden dis-ability that poses a barrier to churchparticipation for the vast majority ofyouth and families we serve is mentalillness.

Our team at Key Ministry is seeking

to address the fact that families with achild with mental illness are less likelyto be active participants in a localchurch. To help individual churchespursue families with children livingwith mental illness, Key Ministry suggests three general strategies: • Serve them• Create welcoming environments

for the children, their siblings and their parents

• Include them in the activities vital to the life of the church

One challenge churches face inserving families with children livingwith mental illness is that many families have had negative experienceswith churches in the past. For example,a parent of two boys treated for attention deficit/hyperactivity disorder(ADHD) expressed to me that “peoplein the church feel they can judge whena disability ends and bad parentingbegins.” One of the strategies that wehave found most effective for churchesseeking to reach out to these familiesin their communities is having regular-ly scheduled, high-quality respite careavailable for free.

Through a partnership with KeyMinistry, Vineyard Community Churchin Cincinnati has launched a website(www.freerespite.com) to provide like-minded churches everywhereaccess to respite training for staff andvolunteers. Networks of churches offering free respite have been devel-oped in the Cleveland-Akron area andin the greater Cincinnati/northernKentucky area. Networks will belaunching in Northwest Pennsylvaniaand Des Moines, Iowa in the comingmonths. We are exploring ways ofmaking the initial respite training

K

1 Rogers, Edward B., Stanford, Matthew & Garland, Diana R. (2011, May). The effects of mental illness on familieswithin faith communities. Mental Health, Religion and Culture. Retrieved from www.tandfonline.com/doi/abs/10.1080/13674676.2011.573474.

One challengechurches face inserving families with children livingwith mental illness is that many familieshave had negativeexperiences with churches in the past.


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

available to churches everywhere overthe Internet.

One church we serve has developeda model for “relational respite,” inwhich small groups within the churchwill adopt a family with a child experi-encing a significant mental illness orphysical disability. Families within thesmall group take turns in providinghome-based respite care and develop-ing relationships that facilitate naturalsystems of support.

Other churches are reaching out totheir communities by providing after-school tutoring for at-risk kids withmental health, behavioral or learningissues in low-income neighborhoods.Key Ministry was recently contactedfor assistance by a church that hasestablished an urban ministry campuswith a charter school for kids who have fallen three or more grade levelsbehind their peers in reading achieve-ment scores. We were asked to trainvolunteers who will serve as parentadvocates, ensuring that studentsreceive appropriate IndividualizedEducation Programs and Section 504 accommodations when they arereintegrated into public schools.In our experience, church leaders often express reluctance in launchingprograms to serve families of childrenliving with mental illness. They areconcerned that the unmet needs of

these families are so great that theirchurches will be overwhelmed by thenumbers of new families attendingweekend worship events. Key Ministryhelps address such concerns by train-ing and equipping children’s ministrystaff and volunteers to welcome andinclude children living with mental

illness and their families who want toparticipate in church activities.

Key Ministry helps pastors, leadersand volunteers problem solve on waysof doing ministry consistent with theirchurch’s culture and strengths. We helpchurches figure out how to minister toan individual family with a child livingwith mental illness. We also offer helpto churches by designing physical environments more friendly to familiesof children living with mental illness

and sensory processing issues. Much of our training programs are developedin response to requests from churchesthat are trying to respond to a specificneed. Last year, we scheduled a specialtraining for churches in Cincinnatiafter they requested training to betterserve kids at risk for aggressive behavior.

We also offer consultation to individual churches through video orphone conferencing to help craft solu-tions when families of children livingwith mental illness or other hidden disabilities present unique challenges.Our staff and volunteers regularly offerlive observation and consultation atchurches in our home areas. No churchis too small to benefit from our help.While some churches opt to establishstand-alone programs to serve familiesimpacted by mental illness and otherspecial needs, we are also experiencedin helping churches include childrenand families into existing church programs.

All training, consultation, resourcesand supports provided by Key Ministryto churches is offered free of charge.Families of children living with mentalillness encounter enough obstacles in attending church that the cost ofequipping churches to more effectivelywelcome and serve them should notpose an additional barrier.

Our team is looking forward tohearing from NAMI members andchurch staff and volunteers interestedin doing more to transform churches intheir communities into places wherefamilies of children living with mentalillness will feel welcome. Please checkout our website at www.keyministry.organd our two official blogs, Church4EveryChild at http://drgrcevich.wordpress.com and Diving for Pearlsat http://katiewetherbee.wordpress.com. Also, “like” us on Facebook forannouncements of future trainingevents.

To learn more about Key Ministry,contact Dr. Stephen Grcevich at [email protected].


F A M I L Y V O I C E

do not believe it. Here I am actual-ly reflecting back on one of thegreatest accomplishments of mylife. What accomplishment is that,you might ask? Well, it is one that

many readers of Beginnings have yet toexperience: the high school graduationof a child who has battled mental illness. All the years of IndividualizedEducation Programs (IEPs), home-work, holiday breaks, beginnings andends to each new school year, and, letus not forget, those extremely longsummers, have finally paid off. Yes,there were definitely times I had to tellmyself “this too will pass” and makethe choice to not give up on “fightingthe good fight.” As I watched my son,who was full of fear and anxiety, walkacross that stage on his graduation day,I felt a greater sense of pride than I hadwith his two older brothers. Therewere not enough words to express thedepth of my admiration for him. Hehad overcome more than most of hispeers and he did it! How did we do it?What did it take? Well, that is what Iwant to share with you. Hopefully,some of the mistakes that I made andthe lessons that I learned will be helpful to those of you still facing the challenge of helping your child navigatehis or her way through the school years.

As I reflect back on everything ittook to get my son through school successfully, there is one thing thatsticks out from the list of endless tasks.That one thing was the personal con-viction and commitment to the beliefthat I had been chosen by God. As aresult of His confidence in me, I wasgiven the task of preparing my childfor the future goal of transitioning intoadulthood. Each and every parent witha child is called to be the guardians of this task whether we believe in ourselves or not. That is why I statedearlier that I made the choice daily topick up the responsibility of this taskand continue to “fight the good fight.”In doing so, I had to conscientiouslyevaluate, and reevaluate, the decisions I made related to my son’s care. I knewthat everything I did would eitherwork toward building him up for independence or cripple him withdependency on me. No matter how difficult, frustrating and exhausting itmight be (and it was), I was committedto continual self-evaluation. The following are just a few of the lessons I learned through my years of trialsand errors and the hard knocks of life.The earlier you implement these lifemanagement strategies for your child,the easier it is to make them a habit

and a way of life for your child.1. Keep a routine. Consistency with

routine helps your child improveresponsibility and life managementskills.

2. Maintain some sort of schedule even on holiday breaks and sum-mers when school is out. Thisrequires a great deal of disciplineand work. However, the attainmentof anything of great value (a littlesanity and a peaceful home)requires great effort.

3. Encourage purposeful and intentional involvement of yourchild with the tasks involved in hisor her mental health care, includingmaking appointments, picking upmedications, calling in re-fills,charting sleep and mood patterns,etc. As parents, it is best to assumethe role of facilitator and have yourchild as the owner of these respon-sibilities. Taking charge for yourchild may be easier, but in the long-run, it will hinder your child.

4. Create an environment that encourages your child to speak upand express his or her needs insteadof having you speaking for him orher. We need to help nurture theconfidence and skills children willneed for self-advocacy. This can bevery uncomfortable and painful forsome of our children, but it isabsolutely essential for the success-ful navigation of middle school andhigh school and transition into lifeafter school.

The more that we do to minimizeour natural inclination to “just takecare of things ourselves,” the more prepared our children will be whenthey come face to face with life afterhigh school. Whether our children’stransition from high school involvesthem moving away from home or stay-ing put, they need us to do all we canto help prepare them for what liesahead. There is a great big world ofopportunities waiting for them!

Fostering Independence in Our Childrenby Dawn Kebert

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NAMI released a new brochure focused on bipolar disorderacross the lifespan. This comprehensive publication serves as a valuable, practical resource for individuals living withbipolar disorder and their families. The brochure includesinformation on the following topics:

• Symptoms • What does recovery look like• Risk factors • Coping strategies• Co-occurring disorders • Friends and family• Diagnosing bipolar disorder • Becoming an advocate• Treatment

This information-rich brochure is available for purchase through theNAMI Store at www.nami.org/store.

Bipolar Disorder Brochure

e all know that involvedschool professionals arecrucial for student success,especially for children living with a mental illness

and those in the process of gettingevaluated. We also know that mostyoung people with mental health problems do not get treatment early. In some cases, early intervention ishampered when school professionalsare unaware of the early warning signsof mental illness in youth.

This is where NAMI’s Parents andTeachers as Allies program comes in.NAMI Connecticut began to offerParents and Teachers as Allies in 2006.Connecticut was one of the first pilotstates for the program. We knew wewanted the program to be a success inour state so one of the first things wedid was apply to our State Departmentof Education for Continuing EducationCredits (CEUs) for the program. Thishelps us to reach out to educators whoneed to complete a set number ofCEUs each year.

Parents and Teachers as Allies is atwo-hour, in-service program thatfocuses on helping school professionalsand families within the school commu-nity to better understand the earlywarning signs of mental illness in children and adolescents and how tobest intervene so that youth with mental health treatment needs arelinked with services. The program alsooffers insight into the lived experienceof mental illness and how schools canbest communicate with families aboutmental health related concerns. Ourpanel of parents, consumers, schoolteachers and facilitators exchange andshare their personal stories, informa-tion and resources in order to helpschool personnel to better understandthe symptoms of an emerging mentalillness and how to effectively address

mental health. In most instances, wetry to schedule presentations during atime when school staff would be at theschool anyway (e.g., on an in-serviceday). While the program is offered forfree, we always ask schools if there is abudget for training that can help payfor the program. Often we receive somefunding from schools that helps tocover the costs of the program.

My hope is that after taking the in-service program, school professionals

will bring a special perspective to students and their families to helpthem understand and find support formental health services. I hope thatschool professionals learn skills onhow to collaborate with parents andproviders to fight against stigma, betterunderstand early intervention andguide children and adolescents to abetter future. I also hope educators canhelp reduce myths and misconceptionsabout mental illness in their local communities and to improve schoolsettings for children living with mentalillness.

Along with the Parents and Teachersas Allies program and monograph, webring resources to each school that wevisit. We use the opportunity to shareinformation on other NAMI Connecticutprograms for parents and caregivers aswell as our support group network.Many teachers have come up after thepresentation requesting information on programs and services to offer toparents. They are eager to learn aboutwhat we have to offer.

I have learned over the years thatmany times the tensions or misunder-standings between parents and teacherscan be greatly minimized when infor-mation and tools to effectively addressmental illness are available to schoolprofessionals and parents. When schoolprofessionals and parents learn to worktogether to promote wellness andrecovery, miracles can happen and wecan find a system of care that reallyworks for our youth and families in the classroom and in the community.

To learn more about NAMIConnecticut’s Parents and Teachers asAllies program, contact Paloma Dee [email protected].


S T A T E N E W S

Delivering Parents and Teachers asAllies in Connecticut by Paloma Dee, family and professional education program manager, NAMI Connecticut

WThe National Parent Helpline provides support and assistance inEnglish and Spanish to parents andcaregivers. The helpline is notspecifically designed for parents andcaregivers of children living withmental illness. Rather, it is for par-ents and caregivers who are seekingadvice or guidance on parenting.NAMI State Organizations andNAMI Affiliates may wish to reachout to The National Parent Helplineto share information about theimportant work that they do and tooffer resources and information onmental health related topics.

For more information about TheNational Parent Helpline, visit theirwebsite at www.nationalparenthelpline.org.

The National ParentHelpline

n November 2010, ChristieBrubaker, a social worker forMentor High School, contactedNAMI Lake County seekingresources and information for

a student who was struggling withschool and mental health relatedissues. During our conversation,Christie shared her thoughts on howwe can make a positive difference inthe lives of her students living withmental illness. As we spoke, the idea of a NAMI Lake County/Mentor HighSchool collaboration to provide ongo-ing support for students affected bymental illness began to take shape.

That initial conversation led to aunique relationship between NAMILake County and Ohio’s eighth-largesthigh school, Mentor High, which has astudent population of approximately3,000. We decided to develop a supportgroup for students impacted by mentalillness. Christie and I were the perfectteam from the beginning. I am a parentof a child living with attentiondeficit/hyperactivity disorder, a NAMILake County staff person, a parentadvocate and a facilitator for variousNAMI Lake County support groupsand education programs. Christie lovesworking with teens and is well-respect-ed by Mentor High administration andstudents. Christie was confident shecould gain the support of the adminis-tration. Between the two of us, weknew we could successfully share ourvision and develop a plan to supportstudents impacted by mental illness.We shared this vision with Joe Spiccia,Mentor High principal, and CaroleJazbec, NAMI Lake County director,and both immediately gave us the go-ahead.

Plans began to take shape quickly.Our first step was to arrange NAMISupport Group Facilitator training forChristie. Second, we determined the

focus, purpose, goals and guidelines ofthe group. This was followed by choos-ing a name, developing a student refer-ral process and making a plan to gainparental buy-in. Christie worked withadministration to secure permission forthe group to be held during schooltime. Structuring the group was easysince we used the NAMI SupportGroup model. We decided to call thegroup E!, which stands for empower-ment.

To get started, Christie emailedteachers and guidance staff explainingthe program and inviting referrals. Asreferrals came in, we interviewed eachstudent in order to explain the pur-pose, goals and guidelines of E! andintroduce NAMI’s Principles of Supportand Group Guidelines.

After a student is admitted, he orshe is given a Parent Permission Packetbearing both Mentor High and NAMILake County logos. The letter statesthat the child was referred to E! andcontains the purpose, goals and guide-lines of the program, including a copyof NAMI’s Principles of Support andGroup Guidelines. Before any studentparticipates in E!, we must have asigned authorization from his or herparent or guardian.

E! is designed to allow students tonormalize their feelings and day-to-dayexperiences. At the same time, they arelearning healthy, effective coping skillsto use when addressing stressors thatoftentimes trigger relapse. We havefound that students participating in thesupport group are surprisingly openabout the impact of mental illness ontheir day-to-day lives.

We learned that while facilitating astudent support group, emotionallycharged “hot potato” issues arise thatcannot be resolved in a 48-minute classperiod. It is necessary to set aside timeimmediately after the group for students

whose emotions or issues are morecomplex. There are instances when we see a need to question somethingfurther or sense that there may be more going on than meets the eye. It is critical to make time for follow-upimmediately afterwards. There havebeen times when serious topics ariseand parents and appropriate authoritieshad to be contacted.

Having a co-facilitator for this typeof group is crucial. Christie and I regularly use nonverbal communica-tion throughout the group. We havelearned to read each other well andpick up on each other’s concerns. It ishelpful to have two sets of ears toensure the accuracy of what is beingdiscussed since reports to Children’sServices may be part of a follow up tothis type of support group. The schoolsocial worker will typically be the leadreporter but the co-facilitator’s input isoften needed.

E! has proven to be a huge successat Mentor High. Students have given usvery positive feedback. Comments like,“It is helpful to know there are otherpeople in the hallway who understandwhat I am going through,” “I do nothave to pretend with them,” “Youshould publicize this more,” and“There are probably a lot more studentswho have a mental illness who coulduse this group” have been shared withus. Students faithfully ask if we arehaving “group” this week. Students arenow self-referring to the group and asenior student came back during hisearly dismissal for a senior project toattend the last meeting of the schoolyear.

To learn more about NAMI LakeCounty’s E! program, contact Christi Farmer, at [email protected],or Christie Brubaker at (440) 255-5817.


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

Providing Peer Support to StudentsImpacted by Mental Illnessby Christi Farmer, director of programs for young families, NAMI Lake County, Ohio

I


B O O K R E V I E W S

List Price: $25Hard Cover: 303 pages (2008)Publisher: Scribner

ny parent of a child who actsout at school will findanswers and relief in the eye-opening book, Lost at School:Why Our Kids with Behavioral

Challenges Are Falling Through theCracks and How We Can Help Them, byRoss W. Greene, Ph.D. In the book, Dr. Greene explains that most kids whomisbehave at school want to do well,but get into trouble because they lackthe skills, such as managing emotionalresponses or expressing their concerns,necessary to respond to challenging situations in appropriate ways.Detentions and trips to the principal’soffice, according to Dr. Greene, do not improve problem behaviors

because these punishments do notteach students the skills they need toimprove their behaviors.

Dr. Greene’s book will be a game-changer for any parent or educatorwho has been struggling to address achild’s challenging behavior. The bookprovides valuable information about an approach for effectively addressingchallenging behaviors calledCollaborative Problem Solving (CPS).CPS is a proactive approach to workingwith children in identifying skilldeficits, triggering situations and alternative methods to manage stressfulsituations. This collaborative approachallows children to express their concerns and to suggest behavior plansthey find helpful and realistic. It alsohelps teachers and parents understandwhat they can do differently to facili-tate skill development and to reduce

stressful situations. The book guidesstudents and adults through developinga response plan that can be put intoplace to prevent challenging behaviorsand to avoid triggering events thatcause these behaviors.

The book also includes frequentlyasked questions, a narrative story ofhow CPS might look in real life andskill evaluation and collaborative problem solving plan worksheets soparents, teachers and students candevelop their own CPS plan togetherand put it into action. The book is agreat tool for understanding andaddressing challenging behaviors. It isa groundbreaking contribution to childbehavior literature and provides a voice for thousands of misunderstoodchildren with challenging behaviorsand their parents and all those strug-gling to help them.

Lost at School: Why Our Kids with Behavioral Challenges Are Falling Through the Cracks and How We Can Help Them by Ross W. Greene, Ph.D.

NAMI has developed a new family guide, Integrating Mental Health and PediatricPrimary Care, to provide families with practical information on how to becomemore involved in the integrated care movement to improve the quality of carethat their child receives.

Integrated care refers to the practice of incorporating mental health care intoprimary care settings and primary care into mental health care settings for thepurpose of improving the quality of care. Interest in integrated care is growingand many communities have begun to pilot innovative approaches to integratedcare that promise to provide higher quality, comprehensive and coordinated carefor youth and their families. It is important that youth and families are part ofthese community efforts.

Integrated care presents youth and families with opportunities to activelyparticipate with both primary care and mental health providers in the integra-tion of their care. This guide informs families about what integrated care means,the benefits of integrated care, what it looks like in practice, how it impactsyouth and families and what they can do to become involved in the integratedcare movement.

To access the family guide, visit www.nami.org/primarycare.

A Family Guide: Integrating Mental Health and Pediatric Primary Care

A

This publication is supported by McNeil Pediatrics Division of Ortho-McNeil-Janssen Pharmaceuticals, Inc. According to NAMI 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

Non-Profit Org.U.S. Postage

PAIDPPCO24506

The National MilitaryFamily Association(NMFA) has published acomprehensive communitytoolkit that was developedby leading experts in thefields of military familysupport, childhood devel-opment, women’s issuesand behavioral health.Finding Common Ground: A Toolkit for Communities

Supporting Military Families includes recommendationson action items and useful resources for communityorganizations, including schools, to use in supportingmilitary families.

To access the community toolkit, visit www.militaryfamily.org/publications/community-toolkit.

Finding Common Ground: A Toolkit for Communities Supporting Military Families

a publication dedicated to the young minds of america from the nami...

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