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McManus, Marilyn C., Ed.Families, Managed Care, & Children's MentalHealth.Portland State Univ., Oreg. Regional Research Inst.for Human Services.9642p.Portland State University, Regional ResearchInstitute for Human Services, Graduate School ofSocial Work, P.O. Box 751, Portland, OR 97207-0751;fax: 503-725-4040; telephone: 503-725-4180; toll-freetelephone: 800-628-1696.Collected Works Serials (022) InformationAnalyses (070) Reports Descriptive (141)Focal Point; Fall 1996

MF01/PCO2 Plus Postage.Advocacy; Behavior Change; Children; CulturalAwareness; Delivery Systems; *Emotional Disturbances;*Family Programs; Federal Legislation; Health CareCosts; Health Insurance; *Health MaintenanceOrganizations; Health Needs; Health Services; *MentalHealth Programs; Parent Participation; PolicyFormation; Welfare Services

This-theme issue of a bulletin on family support andchildren's mental health focuses on managed care and the impact onchildren who are in need of mental health services. Articles include:"Private Sector Managed Care and Children's Mental Health" (Ira S.Lourie and others); "Just What Is Managed Care?" (Chris Koyanagi);"Managed Behavioral.Health Care and Family Involvement: The ArizonaExperience" (Teri Sanders); "Georgia Family Organization Plays KeyRole in Delivery of Children's Mental Health Services" (Sue Smith);

"Montana's Managed Care Gold Rush" (Barbara Sample); "PhiladelphiaCounty Develops Family-Friendly Behavioral Managed Care Plan"(Estelle B. Richman); "Consumer Involvement in Managed Care" (BazelonCenter for Mental Health Law); "Ending Discrimination in HealthInsurance through Federal Law: A Children's Mental HealthPerspective" (Michael M. Faenza); "Principles of Family Involvementin the Development and Operation of Managed Health and Mental HealthCare Systems for Children and Youth" (Federation of Families forChildren's Mental Health); "Operationalizing Cultural Competency in aManaged Care Environment" (Josie T. Romero); "A System in Transition:CASSP Principles Revisited" (Judy Robison); "Managed Care inEvolution: One Family's Experiences" (Teri Sanders);. and "The Impactof Children's SSI Program Changes in Welfare Reform" (Bazelon Centerfor Mental Health Law). Managed health care resource materials are

also listed. (CR)

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Reproductions supplied by EDRS are the best that can be madefrom the original document.

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Families, Managed Care, & Children's Mental Health.McManus, Marilyn C., Ed.

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his document has been reproduced asceived from the person or organization

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A`':;NATIONAL:.B.ULLETIN-4,011RFAMILYiS.U.P.,PORPLCIJILD.REWSMIENTAL411EALS

FAMILIES, ANAGED CARE, & CHILDREN'S MENTAL HEALTH

PRIVATE SECTOR MANAGED CARE AND JUST WHAT IS

CHILDREN'S MENTAL HEALTH "MANAGED CARE?

he federal Child and AdolescentService System Program

(CASSP), launched in 1984, has beenan important contributor to themovement to make major changes inthe way services are provided to chil-dren with severe emotional disordersand their families. The principlesunderlying CASSP call for commu-nity-based systems of care that arecomprehensive and emphasize co-ordination among child-servingagencies, service delivery in theleast restrictive environment, full in-volvement of families, and culturalcompetence. These principles havebeen widely accepted in the worldsof child welfare, child mental health,juvenile justice and special education.The reform efforts have led to a move-ment to restructure these four majorchild-serving capacities into a singlecommunity-based, family-focused,culturally competent interagency sys-tem of care (5). This systematic ap-proach has encouraged a reduction inpsychiatric hospitalization and resi-dential treatment with an accompa-nying shift toward in-home, commu-nity-based modalities that focus onutilizing family strengths, familypreservation, family support:, andwraparound intervention strategies(1, 3, 4).

, -5-

Federal M.ental HealtliParity Law:Enacted.See pages 19

' :L.

Over the last decade the systemof care concept and philosophy havebecome the prevailing public servicedelivery ideology for children andadolescents with severe emotionaldisorders and their families. This shifthas been true only with respect tolong-term care for children and youthwith the most serious problems andneeds, and has been limited prima-rily to the public sector. For thosechildren and families whose care wassupported with private sector dollarsin the form of health insurance, thevast majority of mental health servicesprovided were still being offered in atraditional mode, with services lim-ited to inpatient and outpatient mo-dalities, delivered without a system-atic approach. Families were beingdenied the more family-friendly,strengths-based, community-basedinterventions available in the publicsector.

By 1992, several private mentalhealth provider agencies were de-scribing the development of servicesthat appeared similar to those used

Continued on page 4

In both the public and private sec-tors there is increasing emphasis on

new ways to organize, deliver and fi-nance mental health care. More andmore consumers and families findthemselves dealing with new sys-temshealth maintenance organiza-tions (HMOs), preferred provider net-works (PPOs), primary care casemanagers or point-of-service plans.Even traditional insurance plans nowfrequently use utilization reviews todetermine whether a particular ser-vice is necessary. The overall term forthese new approaches is managedcare.

Instead of allowing consumersopen access to any health service(within the limits set by an insurancepolicy or public program), managedcare systems have a mechanism toconstrain unnecessary use of servicesand to ensure that each person's careis "appropriate" or "medically neces-sary." Managed care is a sharp con-trast to the alternatives: a fee-for-ser-vice system, where the payor agreesto reimburse for specified servicesfurnished to a covered individual, ora public grant program, that providesa pre-set sum of money for specifiedservices but allows the provideragency to determine whom it has thecapacity to serve.

The managed care industry oftendescribes managed care as a systemto ensure that each individual receivesthe right services at the right time inthe right amountno more, no less.But the term "managed care" encom-

Continued on page 3

FAIL 96 3

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RESEARCH AND TRAINING CENTERRegional Research Institute forHuman ServicesGraduate School of Social WorkPortland State UniversityP.O. Box 751,Portland, Oregon 97207-0751(503) 725-4040 (voice)(503) 725-4180 (fax)http://www-adm.pdx.edu/user/rri/rtc

NATIONAL CLEARINGHOUSE:

(800) 628-1696

Copyright © 1996 by RegionalResearch Institute for Human Services.All rights reserved. Permission toreproduce articles may be obtained bycontacting the editor.

The Research and Training Center wasestablished in 1984 with funding fromthe National Institute on Disability andRehabilitation Research, U. S. Depart-ment of Education, in collaboration withthe Center for Mental Health Services,Substance Abuse and Mental Health Ser-vices Administration, U. S. Departmentof Health and Human Services. The con-tent of this publication does not neces-sarily reflect the views or policies of thefunding agencies.

We invite our audience to submitletters and comments.

RESEARCH AND TRAINING CENTERBarbara J. Friesen, Ph.D., Center DirectorNancy M. Koroloff, Ph.D., Director of ResearchPaul E. Koren, Ph.D., Research MethodologistKaye J. Exo, M.S.W., Center ManagerShad E. Jessen, Administrative Assistant

Effects of Family Participation inServices: A Panel StudyBarbara J. Friesen, Ph.D.,Principal InvestigatorLyn Gordon, M.S.W., Project Manager

Multicultural Perspectives ofEmpowermentBarbara A. Minton, Ph.D.,Principal Investigator

An Evaluation of ResponsiveAcademic Assessment for Studentswith Severe Emotional DisabilitiesMary Henning-Stout, Ph.D.,Principal Investigator

Family-Centered Policy:A Study of Family MemberRepresentation at the Policy LevelNancy M. Koroloff, Ph.D.,Principal Investigator

Marilyn C. McManus, J.D., M.S.W.,Project Manager

Increasing MulticulturalParent InvolvementNancy M. Koroloff, Ph.D.,Co-Principal InvestigatorTracy Williams-Murphy, M.S.,Co-Principal Investigator

Family Caregiver Panel StudyThomas P. McDonald, Ph.D.,Principal Investigator

Support for Working CaregiversEileen Brennan, Ph.D.,Principal InvestigatorJulie Rosenzweig, Ph.D.,Senior Researcher

Family Participation in ResidentialTreatment ProgramsBarbara J. Friesen, Ph.D.,Co-Principal InvestigatorJean M. Kruzich, Ph.D.,Co-Principal InvestigatorTracy Williams-Murphy, M.S.Project Manager

Families and TherapeuticFoster Parents as PartnersPauline Jivanjee, Ph.D.,Principal Investigator

A Secondary Analysis of Engagementand Placement in Families Served byMultiple SystemsKristine Nelson, Ph.D.,Principal Investigator

Family Participation in ProfessionalEducation: An InterventionBarbara J. Friesen, Ph.D.,Principal Investigator

Development of a Teacher EducationCurriculum Promoting FamilyPartnerships for Inclusive ClassroomsAmy Driscoll, Ed.D., Principal Investigator

Resource Service and NationalClearinghouse on Family Support andChildren's Mental HealthBeverly A. Stephens, B.S., B.A.,Information Resource CoordinatorDenise Schmit, Publications Coordinator

Center AssociatesMohd Razif Abdrazak, Paul Adams, LauraBisbee, Jennifer Burk, Iris Garvilles, RaeAnne Lafrenz, M. J. Longley; A. MyrthOglvie, Linda Pfohl, E. Darey Shell, JulieSiepmann, Barbara Siriani, Dana Sieverin-Held, Lauren Vorasai

FOCAL POINTMarilyn C. McManus, J.D., M.S.W.,EditorCirculation: 26,000

GRADUATE SCHOOL OF SOCIAL WORKJames H. Ward, Ph.D., Dean

REGIONAL RESEARCH INSTITUTE

FOR HUMAN SERVICESNancy M. Koroloff, Ph.D.,Interim DirectorWilliam H. Feyerherm, Ph.D.,Co-Director

NATIONAL ADVISORY COMMITTEERichard Angell, M.D., Department of

Psychiatry, Oregon Health SciencesUniversity

William Arroyo, M.D., Child/Adolescent Psychiatry, Los AngelesCountyUSC Medical Center

Mania Benjamin, M.S.W., CASSPTechnical Assistance Center,Georgetown University

Ira A. Burnim, J.D., BazelonCenter for Mental HealthLaw,Washington, D.C.

Cleopatra Caldwell, Ph.D., African-American Mental Health ResearchCenter, University of Michigan,lbstitute for Social Research

Beth Dague, M.A., Stark CountyFamily Council, Canton, Ohio

Karl Dennis, Kaleidoscope, Inc.,Chicago, Illinois

Glenda Fine, Parents InvolvedNetwork, Mental Health Association ofSoutheast Pennsylvania

Paula Goldberg, PACER Center, Inc.,Minneapolis. Minnesota

Mary Hoyt, M.S.W., Oregon Depart-ment of Human Resources (Retired),Consultant, Salem, Oregon

Jody Lubrecht, Ph.D., Consultant,Tacoma, Washington

Brenda Lyles, Ph.D., Department ofHuman Services. Fort Lauderdale,Florida

Phyllis Magrab, Ph.D., Child Develop-ment Center, Georgetown University

Larry Platt, M.D., Arizona Departmentof Health Services, Phoenix, Arizona

Betsey Poore. Richmond, VADeify Pena Roach, Parents for

Behaviorally Different Children,Albuquerque, New Mexico.

BEST COPY AVAILABLE VOLUM NO 14

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JUST W

passes so many different ways to dothis that describing a system as amanaged care system gives very littleinformation about how it is reallyorganized and how it operates.

Increasingly, managed care in themental health system is taking theform of capitated payments for theprovision of mental health and sub-stance abuse services to a definedpopulation, called behavioral healthcare. In these plans, a managed careentitywhich can be either public orprivate, profit-making or non-profitreceives a set fee, known as acapitation rate, for each person itagrees to serve. The fee is paid eitherby an insurance company or em-ployer, or by a family or individual.In a publicly funded program such asMedicaid, mental health or child wel-fare, the fee is paid by the state.

In return for the fee, the managedcare entity agrees to provide specificbehavioral and/or physical health careservices. As a general rule, the man-aged care entity is paid the same capi-tation rate for each person, no mat-ter how much the person uses theservices. This is often described as"risk-based contracting," because themanaged care entity assumes the fi-nancial risk of providing servicesbeyond those paid for when that isnecessary.

In the public sector, the extent ofcoverage under managed care is usu-ally defined in a contract and willpartly depend on the fee that themanaged care entity receives. For ex-ample, a Medicaid managed care planwith a high capitation rate is likelyto offer a broader range of mentalhealth services than a plan with alower capitation rate, and is likely toallow children and families to usethese services more often.

As part of the contract, the man-aged care entity agrees to provide,when necessary, any of the coveredservices to any participating child andfamily, even if this results in costshigher than the capitation rate. Man-aged care entities, therefore, have in-

HAT IS "MANAGED CARE"? CONTINUED

centives to control the use of servicesvery closely. Sometimes this is doneby limiting the kinds of services thatphysicians and other mental healthprofessionals can offer a family.

Managed care plans have theirown standards (called guidelines orprotocols) to decide the type of ben-efit and level of care appropriate foreach individual. The standards maylimit the number of times a child orfamily can be seen or the length oftime they can receive a service or sup-port. To avoid losing money, a planmay not provide the services a familybelieves a child needs. Sometimes, aprovider may even fail to speakfrankly with families about the levelof care needed, or may not make areferral to a specialist because it isagainst the policy of the managed careentity to do so. In such cases, it isimportant for families to understandhow to appeal on behalf of their child.

Managed care entities often con-trol costs by reviewing providers' de-cisions about treatment and services.Service providers may have to seekapproval for certain services and themanaged care entity will considerboth the cost of the service and thechild's need. This process is calledutilization review.

There are different ways to providebehavioral health care in a managedcare plan. Some plans are comprehen-sive and include physical as well asmental health services. Other systems"carve out" mental health servicesfrom other health care and providethem through a completely separatemanaged care plan. Some plans fallbetween these extremes, providingroutine mental health care throughthe basic plan while covering treat-ment, services and supports for moresevere or long-term mental healthproblems through either a separatemanaged care plan or the traditionalfee-for-service system.

However the managed care planis set up, managed care plans have astrong track record of saving moneyover the open-ended fee-for-service

approach. In addition, a managed carecontract offers the purchaserwhether a company or a publicagencypredictable costs. These fac-tors are leading to rapid expansion ofmanaged care, both in the privatemarket and the public sector.

Mental health and other stateagencies are now seriously planningand, in a few states, are actually us-ing managed care systems. Many in-dividuals who are covered by Medic-aid already receive their servicesthrough managed care. Increasingly,state officials are talking about com-bining Medicaid, mental health, sub-stance abuse and sometimes childwelfare funds to develop an inter-agency managed care systems for chil-dren with mental, emotional or be-havioral disorders.

A state that requires individualswho are eligible for Medicaid to joina managed care plan must have ap-proval from the federal government.The federal Health Care FinancingAdministration (HCFA) allows statesto waive (i.e., not follow) certainMedicaid requirements if it finds thestate's managed care plan acceptable.When a state requests such a Medic-aid waiver, it must solicit and takeinto account the opinions of con-cerned citizens, such as families andadvocates for children with mental,emotional and behavioral disorders.

Managed care systems in somestates operate through existing pub-lic-sector programs such as commu-nity mental health centers. In otherstates, private, for-profit managedcare companies operate managed caresystems on a contract basis for thestates. Finally, in still other states, thedecision about managed care mayshift to counties or regional bodies.

When there is a contract with aprivate firm, the contract specifies:(1) who will be served; (2) what ser-vices will be provided; (3) how muchmoney the managed care entity willreceive for each adult and child en-rolled; (4) the standards for evaluat-ing the services; (5) what reports will

fAll 1996

5

be produced; (6) how families canappeal decisions that they do not like;and (7) all other aspects of the man-aged care system. Managed care com-panies are required to do only whatis spelled out in their contracts. Com-panies cannot be compelled to doanything that is not contained withintheir contractseven if a particularcourse of action would clearly begood policy.

Where the public sector operatesa managed care system, a public plan-ning document should include thesame description of how the systemwill operate.

Unfortunately, much of managedcare emphasizes cost controls and

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profit-making over quality care.Poorly run managed care can limitaccess to care and result in denial ofnecessary services and supports.Well-run managed care that is ad-equately funded should control healthcare costs while maintaining quality.

Child and family advocacy groupsshould not let the technical terms andaspects of managed care divert themfrom their goals. Discussion of managedcare raises the same policy concernsabout children's mental health thatfamilies and advocates have struggledwith for years. The goals of a managedcare system should be the same as thegoals of any good public system.

CHRIS KOYANAGI, Leg-islative Policy Direc-tor, Bazelon Centerfor Mental HealthLaw, 1101 15thStreet N.W, Suite1212, Washington,D.C. 20005-5002;voice: (202) 467-5730; TDD: (202) 467-4232; fax: (202)223-0409.

Chris Koyanagi

This article is based upon two BazelonCenter publications: Managing ManagedCare for Publicly Financed Mental HealthServices and Managing Behavioral HealthCare for Children and Youth: A FamilyAdvocat8 Guide. Ordering information isprovided on pages 32 and 33.

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in the public sector, including home-based, crisis intervention/stabiliza -tion; respite, and other hospital diver-sion modalities. The current studywas undertaken for the purpose ofdemonstrating: (1) the degree towhich this technology diffusion hadoccurred; and (2) the degree to whichchildren, adolescents and their fami-lies whose care is supported by pri-vate resources were having theirneeds met in a systematic way.

METHODOLOGY.This study was designed as a de-

scriptive study of a limited numberof sites chosen to represent the stateof the art in private systems of care.The stated purpose of the study wasto: (1) identify systematic private sec-tor models for delivering mentalhealth services to children, adoles-cents, and their families; (2) describesuch system models; (3) define theelements of those systems that canand should integrate with public sys-tems; and (4) summarize the lessonsto be learned from the experience ofthese systems.

The working definition of a pri-vate sector system of care thatemerged is: (1) an array of servicesfor children and adolescents with

VATE SECTOR MANAGED CARE

HILDREN'S MENTAL HEALTH CONTINUED

emotional problems and their fami-lies; (2) offered to a population whosecare is not primarily supported withpublic funds; and (3) provided eitherby an agency or group of agenciesunder a managed care contract witha health maintenance organization(HMO), preferred provider organiza-tion (PPO) or insurance companyplan, or provided by an. insurance ormanaged care provider company (byitself or through contracts with sev-eral agencies).

Providers of managed care orga-nizations eligible for selection for thestudy:

Must have a continuum of ser-vices available to a population of pri-vate mental health clients under a feefor service or managed care arrange-ment; that focus must be either aimedat hospital diversion and/or minimi-zation of hospital stay and must havea focus on nonresidential services.

Must haveor be movingstrongly towardan array of servicesthat includes most of the followingcapacities available to the entire popu-lation served; including short-termhospitalization, day/partial hospital,therapeutic foster care, crisis residen-tial/respite, intensive home-based ser-vices, emergency/crisis response and

outpatient services.Must be a sufficiently well-de-

veloped system of care to be able toserve as a useful example to the fieldand to receive national attention.

Should have a mechanism forintegrating these services, assuringand promoting matching of needswith the most appropriate service forthe child and family through the useof care management, case manage-ment, and/or a teaming mechanism(this includes linkages to public sys-tems that offer services needed by thechild and family).

Should have a mechanism forworking on system issues and for thecoordination of services, if the systemincludes several cooperating agencies.

Should have noteworthy accom-plishments in other areas, includingcapacity for long-term care for chil-dren and adolescents with severeemotional disorders; linkages to pub-lic sector agencies through provisionof care under Medicaid. or throughpurchase of service; special emphasison inclusion of families in care man-agement, care of their children, andfamily support; or special emphasison cultural competence.

The request for nominations wassent to a list of over 130 key infor-

0VOLUME10. I10.2

mants. The selection process yieldedonly 26 nominations. 3 of which weregenerated by one of the investigators.

Five nominees were ultimatelyfound to have met the study criteria.Two of these were managed care or-ganizations (U.S. Behavioral Health,Emeryville, California; Value Behav-ioral Health, Falls Church, Virginia),two were private for-profit serviceproviders (Choate Health Systems,Inc., Boston, Massachusetts;InterCare Behavioral Health Services,Pittsburgh, Pennsylvania), and onewas a private, nonprofit service pro-vider (DePelchin Center, Houston,Texas). Site visit reports were gener-ated from information gathered dur-ing the site visits (two days at eachlocation), from study questionnairesand through other materials submit-ted by the sites.

MAJOR FINDINGS.Despite a nationwide search, only

five programs were identified that metthe study criteria. An assumption canbe made that, whatever progress hasbeen made in adding system ap-proaches to the private sector, thedegree of penetration into the main-stream has been very low.

No Private System of Care. Re-gardless of the degree to which therehas been change in private sector ser-vice provision, an impression emergesthat true systems of care do not existin the private sector. While many ofthe system of care principles havebeen incorporatedwhich is a sig-nificant achievementthe MCO andservice provider sites in this studyhave simply created broader, moreflexible and integrated continuums ofcare, rather than systems of care asdefined by CASSP (5). For a systemof care to be creatednot only mustthe service array be expandedbutmechanisms for access to services,system-level coordination acrossagencies, case management and co-ordination at the client level, andmechanisms for financing of servicesmust also be put in place. For themost part, as represented by the sitesin this study, this has not occurred inthe private sector, in which there has

FOCI INT

been a particular failure to offer fam-ily support services or to integrateservices and funding with that available through schools, child welfare,and juvenile justice systems. As such,any private sector advances in broad-ening the array of available servicespale in comparison to the potentialin a well-functioning, public systemof care. In order to be fair, however,it should be recognized that mostcommunities do not have well-devel-oped public systems of care and, giventhis reality, the services offered by thestudy sites go well beyond those avail-able to many public clients nation-wide.

This study identified factors thatsuggest that a truly systematic ap-proach will be difficult, if not impos-sible, to create in the private sector.While every community has the po-tential to create a model public sys-tem of care, there are basic limitationsin private sector practice that make itdifficult to develop a system of care.The major barrier to system develop-ment is the strict adherence to the medi-cal model within private mental healthservices. This approach includes twoimportant elements. The first is theconcept of medical necessity. Under thisprecept, health care is provided un-der the aegis of "health insurance,"and, as such, must be directed aimedat the amelioration of a specific dis-ease entity; all other care is seen assupportive, ancillary, and someoneelse's responsibility. This categoriza-tion of services as either medical orsupportive is extremely limitingwithin a system of care. It separatesrather than integrates care compo-nents. In addition, the emphasis onmedical necessity focuses the treat-ment planning process on the patho-logical aspects of an individual's condi-tion which undermines the use of thestrength-based approach that underliesthe system of care philosophy.

The second problematic factor re-lated to reliance on the medical modelis its focus on acute care. Long-term,disabling conditions traditionallyhave been relegated to a rehabilitationstatus and, thus, excluded from medi-cal attention. As a result, most chil-

tENTEFfiFOIVMENWHEALTHI;ofERVICES EECIRSPRING14,ES,

SYSTEM Si0E4IVIANA.GEDZCA.R

The Substance Abuse and Men-tal Health Services Ad-

ministration's Center for MentalHealth Services (CMHS) prOvidesnational leadership for improvingthe quality and availability of treat-ment and prevention services formental illness, particularly withrespect to adults with serious men-tal illness and children with seri-ous mental; emotional or behav-ioral. disorders. CMHS Staff haverecognized that changes:in healthcare financing and organizationmade it imperative that all parties(or, stakeholders) with an interestin managed care systems workcollaboratively in an effort to de-liver accessible, appropriate, com-prehensive, culturally competent,costeffective services:of the high-est quality. Accordingly-,CMHSdeveloped a set nf 'principles ioguide stakehOlders in theplanning,implementation and:evaltiation ofmanaged care SySteins. :Criticalstakeholders include consumers,family members, advocates, federalagencies, counties and local com-munities, Native American tribes,purchasers, managed care organi-zations and providers workingwithin managed care systems.These principles address:(1) quality of care;(2) consumer participation and

rights;(3) accessibility;(4) affordability;(5) linkages and integration; and(6)- accountability.A free two-color poster of the prin-ciples may be obtained from: Na-tional Mental Health ServicesKnowledge Exchange. Network(KEN), P.O. Box 42490, Washing-ton, D.C., 20015; (800) 789-2647(voice); (301) 443-9006 (TDD).The principles may. also bedownloaded from the followingWorld Wide Web site: http://www.mentalhealth.org/

fAll 1996 7 oCCT NOVn AVAII API C

dren and adolescents with severeemotional disorders have most oftheir care provided by child welfare.juvenile justice. and special educationagencies. rather than health or men-tal health agencies. supported by pub-lic or private health insurance. Thefocus on acute care has been fosteredby the private sector health insuranceindustry, including managed mentalhealth care, and has reinforced this

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separation between mental health ser-vices and the rest of the system of care.Until a framework is developed thatbridges the gap between the medicalmodel and the concepts of rehabilita-tion and support, private sector clientswill continue to be denied access to thesystem of care until the point at whichthey become public sector clients.

Positive Potential of ManagedCare. While managed care has been a

I I A 1 A II I

A I 1. . 1' I'

InAugust 1996 a national coalition of 35 family leaders from the fields of

mental health, child welfare, developmental disabilities, and special health

care needs.gathered in PortsmoUth, New Hampshire to discuss and strategizeabout the future of long-term supports and services for children in a man-

aged care environment. _ .

In the past decade, the field of long-term supports for children has wit-nessed the emergence of innovative and responsive approaches to support-ing all children in faMilies. These approaches to providing long-term sup-port include: supporting children in community -based early care andeducational:opportunities, neighborhood schoolS and regular classes, andcommunity health care services. Unfortunately:public policies and fund-ing mechanisms.too often limit the availability of these effective forms ofsUpports ind,Serinces to children and 'families. New health care policiessuch as managed. Care present new challenges and oriportunities to offerlong-term supports and services to children requiring extensive and ongo-

ing supports. .

Given the fact that states have begun to enroll children in managed careplans for long-term services and supports, family leaders felt that it wasimperative to mobilize a national planning meeting. The group of 35 na-tional family leaders and policymakers met for two days to discuss anddefine the values, principles, and strategies that can be used to affect na-tional change in the field of long-term supports and services for children.

Although the participants' represented diverse backgrounds, there wasunanimous agreement concerning the need to coalesce as a unified voiceto affect public policy and influence statewide' change. Accordingly, thecoalition divided into three national work groups. One group is gathering,developing and disseminating a set of guiding principles to be used in thedevelopment of state and national reform in the area of long-term supportsand services for children. These principles can be applied across any con-stituency group advocating for the rights of children and families in needof long-term assistance. The second group is identifyingall existing familyand consumer organizations who are interested in joining in the coalitionfor children in need of long-term supports and services. The-third group isdeveloping a model contract specifying language to assure consumer-con-trolled, family-centered, community-based, flexible long-term supports andservices for children involved in the systems of mental health, child wel-fare, special health care needs and developmental disabilities. For addi-tional information on the work of the coalition contact: The Hood Centerfor Family Support, Dartmouth Hitchcock Medical Center, One Medical

Center Drive, Lebanon, New Hampshire 03756; (603) 650-4419 (voice);(603) 650-7722 (fax); E-mail: cindi.lapointe@dartmouth.edu

much maligned health care approach.the service delivery philosophies ofthe managed care organizations inthis study appear to he extremelycompatible with the system of care :

philosophy. Both are concerned withoffering children and adolescents carefor their mental health problems us-ing the most appropriate and leastrestrictive alternatives. Both under-stand that one of the primary vehiclesthat makes this possible is the avail-ability of a full array of services. Thishas led to development of home-based and other non-institutional ser-vice modalities for use by both pub-lic and private populations. Althoughthe scope of that array is seen morenarrowly by most MCOs, and someservices such as therapeutic foster andgroup home care and respite are rarelymade available, the recognition of theneed for a continuum of care withinthe managed care world has broughtthe public and private sectors closertogether.

Both MCOs and public systems ofcare rely on some form of case man-agement to coordinate and assure ac-cess to services. At the managed caresites in this study, individual clientshave their course of treatment fol-lowed by a care manager, who is re-

fcir knowing the client's en-tire mental health history', accessingthe specific services needed, andmonitoring the effectiveness of a se-ries of interventions. In systems ofcare for children and adolescents withsevere emotional disorders and theirfamilies, case management has thesesame functions and desired outcome.There are, however, significant differ-ences between these care coordina-tion mechanisms. In systems of care,the case manager's role also includesteam building and the provision ofsome direct, ongoing support to thechild and family. In managed care, thecare manager role additionally in-cludes the responsibility for the au-thorization of specific service modali-ties and amounts of care, as well asfor utilization review.

Even the negatively perceived costcontainment emphasis inherent inmanaged care is not inconsistent with

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FOCIAINT

the goals of systems of care. In fact,cost savings has been one of the mostimportant aspects of the changes fol-lowing the introduction of the systemof care concepts into public mentalhealth. While this cost saving goal hasnot been as overtly touted as in theprivate sector, the perception of re-duced costs following the public sec-tor shift from institutional to commu-nity-based care has kept system ofcare development alive.

In both public and private set-tings, new ways are being developedto best take advantage of the dollarsavailable. In this case, the technologytransfer has been primarily from theprivate to the public sector as man-agement strategies utilized by MCOsare now being more scrupulously ap-plied by public systems of care. Mostprominent among these are the useof outcome measures to monitor in-dividual progress as well as systemefficiency and the use of systematicprocesses to determine how to focusresources and maximize availablefunds (2). Both of these private sec-tor strengths provide important les-sons to the public sector, which hashistorically done poorly in the areasof outcome measurement and re-source allocation and management.

The Growing Private Sector Con-tinuum of Care. The last major find-ing supports the original hypothesisof the study: some private agencies arenow offering private sector clients thetype of alternative services seen in thepublic sector. The service providersites in this study were each provid-ing several non-hospital program-matic options for those individualswho required a service more intensiveand/or supportive than outpatienttherapy. These included intensiveoutpatient treatment, crisis stabiliza-tion, crisis respite, and in-home ser-vices. One site even offered therapeu-tic foster and group home care.Although most of these services weredelivered within a traditional cat-egorical program paradigm, the po-tential for them to be used systemati-cally was built into them. In fact, allthree study sites had developed theirown managed care products and were

rtaking advantage of the potential tointegrate their service programs. Theability of providers to offer a con-tinuum of care that supports the posi-tive potential of managed care isgrowing, and an increasing numberof MCOs and other insurers are.learn-ing to utilize this capacity.

It is important to re-emphasizethat, nationwide, very few providerorganizations have developed the ca-pacity for a broad continuum of care.For the most part, mental health clin-ics nationwide are still "stuck" in atraditional outpatient therapy mode,while hospitals are still primarily of-fering acute inpatient services. Thevaluable lesson to be gleaned from theproviders in this study is that, whenan array of innovative services is de-veloped, private sector insurers willuse them. As one provider said, "Ifyou build them, they will come." Inthe past this adage has held true forhospital beds and it is now becominga reality for community-based, fam-ily-centered services.

THE SIMILARITY BETWEENMANAGED CARE AND SYSTEMOF CARE.

An unexpected study finding wasthe recognition that the underlyingprinciples of managed care are simi-lar to and entirely compatible withthose of systems of care for childrenand adolescents with serious emo-tional disorders and their families.Both sets of principles aim to offer themost appropriate level of care that anindividual needs at any moment intime. In the system of care this isrepresented by the concept of leastrestrictive environment and in man-aged care this is represented

through levels of care guidelines.In addition, both system of care

principles and managed care prin-ciples rely on flexibility in the use ofservices and in finding innovativeapproaches. In managed care this ismanifest in those instances wheremanaged care contracts allow for anunlimited benefit as incurred by thoseorganizations found in the study.While not as inclusive and malleableas public sector wraparound services,the unlimited and well-controlledbenefits offered under some managedcare plans are based on the same un-derstanding: the correct amount ofthe right services leads to the mostpositive result while also being themost efficient.

For managed care to reach its po-tential, it must be funded adequatelyand utilize care management and ser-vice provision policies which empha-size full-service delivery. Similarly,public systems of care can only reachtheir potential when the efficienciesof care management and fiscal respon-sibilitythe hallmarks of managedcareare utilized.

CRITICAL PRACTICE ISSUES.When a reasonable managed care

product is adequately supported mon-etarily, its concepts are entirely com-patible with the principles of publicsystems of care. Both managed careorganizations in this study were at-tempting to approximate the theoreti-cal potential of managed care. Theyhave done this by creating an ap-proach that focuses primarily on ser-vice delivery rather than on costs.First, they created a clinical model ofcare management in which licensedand experienced mental health pro-fessionals are asked to make clinicaljudgments within the context of high-level (often psychiatric) supervision.Secondly, they encouraged employersto purchase liberal benefit packagesfrom them.

Each of these organizations offeran unlimited mental health benefitthat is closely managed. In doing so,they recognized that the best andmost efficient care is that which canbe crafted to meet an individual's spe-

fAll 1996 9

FOC111110iNT

cific needs and is flexible enough tobe modified as necessary. When con-trolled by a care manager who knowsthe facts and history of the case andthe full range of service alternativesin the community this care can bemore clinically appropriate and, of- ;

ten. less costly.Further. both managed care orga-

nizations acknowledged the need toview child and adolescent services asdifferent than those provided to adults.

This has encouraged the identificationof providers who can offer child-ori-ented services and the development ofmechanisms to support them.

Finally, the leaders of the pro-grams nominated for this study for-merly worked in the public commu-nity mental health and child-welfareoriented arenas. Their approach toservices focuses on the special needsof children and adolescents and anappreciation for non-institutional,

: I ' 11

I Ii ,

Jr'September.1995-. about 30 parent leaders frqth around the United States

gathered at Egg Harbor, Wisconsin to diScusShealth care foi.children withspecial health care needs. Based on a universal concern about the unknowneffeCts of Managed care on children, the families developed a set of family-

driven standaidi for managed care systems treating children with specialhealth care needs. The families identified five key principles that shouldguide the deliVery of services to children with special health care needs in a

managed careenvironment.:core of any:health care :system.- Managed care systems''

acknOiViedge. and support the .expertise dia,t.fainilies bring to their

caretaking, decision - making and Care-coordinating roles; accept and valuetheriChly ditierSe traditions and langtiagei fainilies bring tO health care Set-.

, .. ,

rings; and respond to .the needs identified by families and providers....Family- professional partnership, Managed care systems should recog-

nize that outcomes for. children with.special health Care needs will improve

when families and professionals make decisions jointly, with each party re-

specting thi expertise, experiences, training and resources that each brings

to the care of the child.Access. Children with Special health care needs should enjoy uncon-

ditional and equitable access to quality primary, preventive, habilitative,and specialty health care services and equipment at reasonable' cost totheir families..

Flexibility. Medical decisions and referrals should be based on the unique

circumstances of the family and condition of the child.Comprehensive, coordinated, community-based care.Managed care sys-

tems should assure a coordinated system of comprehensive services to chil-dren :with special health care needs and their families through direct serviceprovision within the plan and collaboration with public and private com-munity services outside of the plan. These services should be delivered asclose to the child's home as possible, and include appropriate outreach tounderserved families.

In addition to the principles, the participants at the Egg Harbor meetingdeveloped an extensive list of specifid strategies for putting the principles

into action. F6r additional information concerning the principles developedat the Egg Harbor meeting, contact any of the following: Bev Crider, MiChi-

gan Department of Health, Plaza Building, 3rd Floor, South Tower, 1200Sixth Street, Detroit, Michigan 48226, (800). 359.73722; Josie Thomas, Insti-

tute for Family-Centered Care, 7900 Wisconsin Avenue, Suite 405, Bethesda,

Maryland 20814, (301) 652-0281; or Polly Arango, Fainily Voices, P.O. Box

769, Algodones, New Mexico 87001, (505) 867-2368.

community-based services. Theseleaders created a full continuum ofcare heavily focused on hospital di-version.

A BALANCED VIEW.This study presents a positive view

of managed behavioral health care'spotential to provide systematicallydelivered services; however, it is im-portant to recognize that the dreamof managed care is far from reality.While there is a potential within man-aged care to enhance the delivery ofservices, much of current managedcare practice focuses on cost contain-ment and profitmaking.

Unfortunately, child-serving pro-fessionals have rarely had the oppor-tunity to see care managed in a posi-tive way. Rather, they experienceservice restrictions and demands thatrequire them to practice in a mannercontrary to their training. The in-creased paperwork that accompaniesmanaged care, although necessary forthe efficiency of the managed careorganization, is burdensome to clini-cians and agencies alike.

This is similar to the experienceof many family members with chil-dren and adolescents with more se-vere mental health problems. Theyoften see limits rather than bettercare; rigidity rather than flexibility inservice allocation. When a child's careneeds become intensive and longterm, families are faced with beingdenied further services. When theirmental health benefits have been ex-hausted, the care for their child ismost often shifted to public sectoragencies such as schools, child wel-fare and juvenile justice.

Managed care organizations takelittle responsibility beyond the con-fines of the individual's benefit pack-age. By definition, they can only of-fer a partial approach to caretheacute part. While family membersmight initially obtain a systematic,well-designed intervention, whenbenefit limitations are reached, theyget nothing. When there is an avenueof eligibility, their care is shifted tothe public sector. While this is notunlike the rest of the health insurance

BEST COPY AVAILABLE volu:R 10

industry and many public mentalhealth programs, it does not live upto the promise of managed care.

The realization of the full poten-tial of managed care and the integra-tion of the system of care principlesinto the private sector requires thefollowing:

Employers must recognize thevalue of increased mental healthamong their employees and theirfamily members. As long as corpo-rate America is satsfied buying acheap and inadequate mental healthservice package, there will be no roomfor improvement in service delivery.The process of educating employerscould be facilitated if employeestheconsumers of mental health careunderstood the need for and de-manded more appropriate servicesand a system of care approach for ad-dressing more severe problems.

Managed care organizations mustshift their philosophical balancefrom cost containment to service de-livery. The companies in this studydemonstrate that a "service first, costcontainment second" approach is fea-sible, marketable and profitable. Mostmanaged care organizations expressthis philosophy, but the rhetoric ishollow when they agree to contractsthat do not provide adequate re-sources to actualize it.

Related to the balance in servicephilosophy is the issue of profit.There are no standards as to the ac-ceptable degree of profit a health careinsurer or care management companyshould reasonably make. While somewould argue that it is unconscionableto make any profit on health care, itis probably more realistic to addressthe limitation of profits. Regulationof profits would make reaching anappropriate balance between costcontainment and service deliveryeasier to attain.

The full range of service modali-ties must be widely accepted. Manyemployers, managed care organiza-tions and service providers adhere toan extremely traditional mentalhealth service model that focuses oninpatient hospitalization and outpa-tient therapy, with some partial hos-

,44*FOCOOINT

pitalization and short-term residen-tial treatment. This study demon-strates that a broader continuum ofcare is not only within the bounds ofgood clinical practice, but also offersbetter and less expensive services.

An enormous amount of moneyand other resources must be investedto create a service system that canmeet the individual needs of the en-tirepublic and privatechild andadolescent mental health consumerspopulation. To date our society hasbeen unwilling to make that invest-ment. Accordingly, we have mis-spenta large percentage of our currentfunds on overly-expensive inpatientservices. As this study demonstrates,however, when we are ready to makethe necessary commitments, both theknowledge and the technology areavailable to create a system of carethat can meet the individual needs ofthe whole population.

IRA S. [CURIE. M.D.,

Human ServiceCollaborative,6706 Old StageRoad; Rockville,Maryland 20852,(202) 333-5998(voice), (202 )333-8217 (fax);

STEVEN W. HOWE,

M.S.W., MarylandState Director,Pressley RidgeSchools, 805 E.Fayette Street, Bal-timore, Maryland2 1 2 0 2 4 7 1 2 ,(410) 576-8300 (voice), (410) 576-8383 (fax);

LINDA L. ROEBUCK,

M.S.S.W., SouthernRegional Man-ager, Missouri De-partment of Men-tal Health, P.O.Box 5030, Spring-field, Missouri Linda Roebuck

65802, (417) 895-7415 (voice), (417) 895-7488 (fax).

Ira S. Lourie

Steven Howe

Excerpted, with permission, from

Systematic Approaches to MentalHealth Care in the Private Sector forChildren, Adolescents and Their Fami-lies: Managed Care Organizations andService Providers, Ordering informa-tion is provided at page 32.

REFERENCES:

1. Burchard, J., Burchard, S., Sewell, R. &VanDenBerg, J. (1993). One hid at atime: Evaluative case studies anddescription of the Alaska youthInitiative demonstration project.Washington, D.C.: GeorgetownUniversity Child DevelopmentCenter, National Technical AssistanceCenter for Children's Mental Health.

2. Cross, T. & McDonald, E. (1995).Evaluating the outcome of children'smental health services: A guide for theuse of available child and familyoutcome measures. Boston: TheTechnical Assistance Center for theEvaluation of Children's MentalHealth Services at the Judge BakerChildren's Center.

3. Katz-Leavy, J., Lourie, I., Stroul, B. &Zeigler-Dendy, C. (1992). Individ-ualized services in a system of care.Washington, D.C.: GeorgetownUniversity Child DevelopmentCenter, National Technical Assistancefor Children's Mental Health.

4. Stroul, B. (1993). Systems of care forchildren and adolescents with severeemotional disturbances: What are theresults? Washington, D.C.:Georgetown University ChildDevelopment Center, NationalTechnical Assistance Center forChildren's Mental Health.

5. Stroul, B. & Friedman, R. (1986). Asystem of care for children and youthwith severe emotional disturbances.(reved.). Washington, D.C.: NationalTechnical Assistance Center,Georgetown University ChildDevelopment Center.

MARKfYOURfCPLENDARSii

Annual Building On FamilyStrengths Conference

May 8-10, 1997Hilton Hotel,'Portland, Oregon

For Additional Information:Kaye Exo, M.S.W.,

Conference CoordinatorResearch and Training Center on FamilySupport and Children's Mental Health

P.O: Box 751, Portland, OR 97207-0751Voice:(503)725-5558 Fax:(503)725-4180

E-Mail: exok@pdx.edu

1 1fAlt13996 -- RPPT PrNov Al/A a P.%

FOCAPOINT

MANAGED BEHAVIO

B rief History. Prior to 1988,Arizona's children and families in

need of behavioral health serviceswere faced with a practically non-ex-istent service system. The typical ser-vice offered was out-of-home treat-ment. As a result of the lack ofcoordination and limited serviceavailability, a coalition of families,child advocates, behavioral healthprofessionals and others interested inmaking a change for the better gath-ered as a coalition and made recom-mendations to change the system.These efforts resulted in the enact-ment of two children's behavioralhealth statutes.

Arizona Revised Statute §36-3421created the Council on Children'sBehavioral Health. This 22-membercouncil oversees the development ofthe children's behavioral health sys-tem and makes recommendations tothe Governor and to the Arizona Legislature. The statute requires that aminimum of four members of thecouncil shall be parents or guardiansof children receiving _behavioral'health services. In addition to ap-pointing parents or guardians, theGovernor, Speaker of the House ofRepresentatives and President of theSenate appoint an additional ninecouncil members. The remainingmembers required by the statute in-clude representatives from the fivechild-serving state agencies and a rep-resentative of the Navajo Nation.

Arizona Revised Statute §36-3431directs- the Division of BehavioralHealth to develop and implement acomprehensive behavioral health ser-vice system for children. Accordingly,an intergovernmental agreement be-tween the state child welfare, education,juvenile justice and behavioral healthsystems was established. This agree-ment provides for the development ofa collaborative needs and resource as-sessment and the development of afunding and service delivery plan.

The Arizona Health Care CostContainment system (AHCCCS) is

RAL HEALTH CARE AND FA

THE ARIZONA EXPERIENCE

Arizona's Medicaid program and thestate's health care program for personswho do not qualify for Medicaid. TheAHCCCS acute care program is cur-rently in its thirteenth year of opera-tion. When the AHCCCS programbegan in 1982, from the state's per-spective, it was necessary to-delay theimplementation of behavioral healthcare services until the program couldstabilize: In 1990, AHCCCS beganphasing-in comprehensive behavioralhealth services starting with Medic-aid-eligible children under the age ofeighteen who required residentialcare. Behavioral health services forMedicaid-eligible children under theage of eighteen who did not requireresidential care were added on April1, 1991. The eighteen, nineteen andtwenty year olds also began receivingservices on this date.

The "phasing-in period" (whichwas more of a slam dunk) createdmuch chaos. Providers, family mem,-bers and adult consumers were com-pletely lost. After the dust settled, wehad a clearer view of the direction weneeded to go in. We needed to con-tinue to stay together and ensure thatour voices were heard in planning oursystem of care.

Today. Arizona's Behavioral HealthDepartment chose to divide the stateinto five regions. The state contractswith Regional Behavioral Health Au-thorities or RBHAs. These RBHAs areall non-profit and are required by con-tract to have family members on theirboards of directors as well as on theirquality assurance committees.

Local children's councils are anoutgrowth of the Children's Behav-ioral Health Council. Parents serve onsome of the local councils. Each- ofthe five state regions has at least onelocal children's council. The RBHAsregularly participate in the local coun-cil meetings. Local council memberscome together four times each yearat various locations throughout thestate to receive updates on the activi-ties of the monthly state council meet-

0VOLUME 10, 00.2

MILY INVOLVEMENT:

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ings, familiarize themselves with spe-cific local concerns, and share infor-mation concerning what is workihgwell in various parts of the state.

Cultural Competency. Behavioralhealth needs cross all cultural andethnic backgrounds. Yet multiple bar-riers exist for Native Americans seek-ing treatment and other assistance.Some of the concerns that have facedour nineteen Native American tribesinclude geographic isolation, lack ofsupport for traditional Indian healingapproaches, inadequate funding andunclear roles and responsibilities.Each tribe has representatives on theInter-Tribal Council of Arizona. Thiscouncil is very active in addressingand presenting the needs of our In-dian people.

In an effort to identify strategiesfor addressing the challengei of Na-tive American people with mentalhealth needs a national conference,held in Albuquerque, New Mexico inApril 1993, brought together over 250mental health care representativesand family members. In June 1994; afollow-up conference attracted ap-proximately 80 participants to specifi-cally examine the needs of Arizona'sNative Americans.

As a result of the follow-up con-ference and other cultural needs, Ari-zona citizens developed a culturalcompetency plan for the administra-tion and delivery of behavioral healthservices. The steering committee in-cluded representatives from provider.agencies, behavioral health planningand advisory councils, families, tribesand other state agencies. The imple-mentation of the plan will be annu-ally assessed at the state, regional andlocal provider agency levels beginningin January 1997. The Children's Be-havioral Health and State PlanningCouncils will regularly review andmake recommendations on the basisof the assessments.

Family Involvement. Arizona hasalways prided itself on its legislativelyMandated family involvement in

planning and policymaking. Al-though I concur, in practice it hasbeen difficult for families to travel toPhoenix for countless meetings. Fur-ther, most family members had noidea how committees operate. Al-though families were pleased whenthe state began to reimburse them forthe expenses associated with theirparticipation in meetings, reimburse-ment alone was simply not enough.Only a very small number of familymembers were involved andofthose familiesfew represented eth-nically diverSe or rural populations.

When the opportunity. presenteditself, I joined M.I.K.I.D. (Mentally IllKids in Distress), Arizona's statewidefamily organization for children'smental health. Subsequently, I becamepresident of our board of directors. Iwas determined to seek funds for ourorganization to help educate familymembers and encourage their in-volvement. M.I:K.I.D. successfullynegotiated a contract with the Depart-ment of Behavioral Health Services to:provide education to families as wellas professionals; participate on vari-ous councils, committees and task

. forces; develop a parent manual; pro-

FOCOOINT

vide one-to-one advocacy; and in-crease the number of support groupsaround the state. Each regional behav-ioral health authority contributesfunds to the state that help supportthe provision of our services.

Although M.I.K.I.D. is fundedthrough our state contract to providean array of services, we continue tostruggle to increase the number offamily members involved in planningand policymaking. We work closelywith state officials and with local pro-viders to help us identify family mem-bers who would benefit from our ser-vices as well as to recruit them forservice on Arizona's various councilsand committees.

Arizona has been in the managedcare business for some time and weare very proficient in our ability to"manage" costs. One of the ways inwhich we have contained costs is tolimit the number of individuals eli-gible to receive publicly-funded man-aged care health services. The 1996federal annual income poverty levelfor an individual is $7,740.00. Ari-zona restricts eligibility for some ofour programs to as low as $2,863.80in annual income (37% of the federal

poverty level). The share of federalfunding we receive is also low becauseour state so severely restricts who canqualify for services. Medicaid recipi-ents have priority in the service de-livery system.

Although our service matrix cov-ers a wide variety of services (includ-ing Native American traditional heal-ers' reimbursement and wraparoundflexible funding) the non-Medicaidpopulation is not able to access all ofthe services. Few of our families havethe time and energy to become ac-tively involved at the policymakinglevel because their .own family'spresent needs are not being metthrough our system. Promoting fam-ily involvement is an ongoing processwhich should be relentlessly encour-agedif not mandated from theagency level to the highest state levels.

TERI SANDERS, State-wide Family Advo-cate, M.I.K.I.D.,239 Buffalo Trail,Flagstaff, Arizona86001; (520) 525-9244 (voice); (520)525-2627 (fax). Teri Sanders

GEORGIA FAMILY ORGANIZATION PLAYS KEY R

CHILDREN'S MENTAL HEALTH SE

I n 1982 Jane Knitzer described fed-eral leadership in the areas of

children's mental health as the "un-filled promise." As a result, a coali-tion of individuals and groups advo-cated to Congress and funds wereappropriated for a federal initiative forchildren with mental health disabili-ties. In 1984 the National Institute ofMental Health (NIMH) launched theChild and Adolescent Service SystemProgram (CASSP). The goal of theCASSP program was to assist statesand communities to develop systemsof care for children and youth withseveral emotional disorders. Georgiawas one of the first states funded bythis federal initiative and, as part ofthe state plan, developed a core groupof family members that they sent to

CASSP meetings in Washington, D.C.and to Families as Allies meetingsaround the state of Georgia. Thisgroup of parents, with the support ofthe Georgia CASSP program, formedthe foundation of the Georgia ParentSupport network.

The Georgia Parent Support Net-work, Inc., was founded in 1989 by30 parents and professionals whoshared a vision of family involvementin issues that affect children andyouth with mental health disabilities.The Network has grown to over 2,500members. The members sit on almostevery policymaking board ,where de-cisions affecting children and youthwith mental disabilities are made.Network activities include a quarterlynewsletter, parent support groups,

OLE. IN DELIVERY OF

RVICES

two conferences a year, individualfamily advocacy, a toll-free 800 tele-phone number and, in the last year,the delivery of direct services that in-clude respite, parent advocates, a ju-venile justice safety net, and oversightmonitoring and implementation ofservices in Fulton County. The Net-work continues to grow and is con-stantly redefining the family advocacyrole to determine where families canand should be involved, to ensure thatthe needs of families whose childrensuffer from serious emotional disabili-ties are met.

In 1993 a number of different ad-vocacy organizationsrepresentingmental health, mental retardation andsubstance abusecame together todevelop and support legislation that

01991

,MR

FOCPOINT

will forever change the way servicesin Georgia are delivered to adults andchildren who suffer with mentalhealth, mental retardation and sub-stance abuse disabilities. The Geor-gia Parent Support Network helpedcraft this legislation and was part ofthe advocacy effort to get it passed.Georgia's House Bill 100 divides thestate into nineteen regions and cre-ated regional boards. Fifty-one per-cent of the board seats are reserved forconsumers and their family members.

Georgia's nineteen regional boardsoversee the planning, purchasing, andevaluating of all mental health, men-tal retardation and substance abuseservices. Prior to the legislation, 92%of all services were delivered by thepublic system. Consumers had littlechoice in selecting services. Further,services were not equitably distrib-uted throughout the statemany ar-eas had very few services availableand there were few checks in place tomeasure consumer satisfaction.

House Bill 100 returned local con-trol of services to communities. Ap-pointments to the regional boards arerecommended by the local countycommissioners according to a for-mula that was developed to ensurethat all three disabilities (i.e., mentalhealth, mental retardation and sub-stance abuse), children, and ethnicminorities are equitably represented.The legislation recommended severaladvocacy organizations to the corn-missioners as people to involve in thedevelopment of the boards. The Geor-gia Parent Support Network was oneof these organizations.

. House Bill 100 represents a para-digm shift in the way mental health,mental retardation and substanceabuse services are delivered in Geor-gia. The crafting of the legislation, theoversight of the passage of the legis-lation and the following transitionphase has been closely monitored bythe "811 Commission." The stateleaders serving on this commissionhave given hundreds of hours to en-sure that the transition has been assmooth as possible. There have beencountless committees and hearingsthroughout the state of Georgia for

the past three years to ensure thatevery voice is heard and validated.The topics addressed at these hearingsinclude: (1) single point of entry intothe system; (2) best practices, liabil-ity, evaluation processes, equity ofservices between disabilities, and en-suring a smooth transition from theformer public system to the new pub-lic/private collaboration.

While the process of restructuringthe entire mental health, mental re-tardation and substance abuse systemwas underway, managed care and itsconcomitant new challenges and op-portunities arrived on the scene.Georgia decided to "carve out" theseservices and 'submitted an 1115waiver. The Georgia Health PolicyCenter at Georgia State University isdeveloping final recommendationsconcerning. the role of managed carein the delivery of all health care ser-vices. The Behavioral Health PlanningUnit, a state agency created to spe-cifically address the needs of consum-ers of mental health, mental retarda-tion and substance abuse serviceswithin managed care, is advising theGeorgia Health Policy Center on thesematters.

The Georgia Parent Support Net-work has been very active in the en-tire managed care process. The presi-dent, board chair, other boardmembers, and members of the orga-nization at large have attended mostof the meetings held by the BehavioralHealth Planning Unit. The state ofGeorgia sponsored key people fromchild welfare, education, mentalhealth, juvenile justice, youth ser-vices, the Georgia Parent SupportNetwork and the Behavioral HealthPlanning Unit to attend a conferenceon managed care in California. Asmanaged care continues to unfold,many more families are becoming in-volved in the process.

The Network, in response to thepolitical challenges of the last eigh-teen months, decidedin order toprovide for the needs of families andchildren and to meet the challengesof the futureto become involved inthe new public /private venture toimprove and expand services to chil-

VOLUME IN, NO.2

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dren with emotional disabilities. Tothis end we developed a "safety net"that provides community stabilizationand safety for adjudicated juvenilesexual offenders. If these childrenwere not in this program they wouldeither be in a mental health institu-tion or incarcerated in a juvenile de-tention facility. This program enablesthem to receive out-patient treatment,live safely in their communities, at-tend school and church, play LittleLeague, attend summer camp and domost of the other things children theirage do.

The Network developed a respiteprogram that has two components.The first component is crisis interven-tion. If a child is in danger of beingremoved from his or her home, theNetwork provides an emergency re-spite placement that often stabilizesthe situation and diverts hospitaliza-tion. The second component isplanned respite, where breaks arescheduled that allow families andchildren time away from each otherso that crisis situations may beaverted.

For the past year, the Network hasprovided seven parent advocates to athree county region. These advocateswork with families with many differ-ent needs. Their job is to assist thefamily in any way y needed. Dutiesinclude attending IndividualizedEducation Plan (IEP) meetings, help-ing individuals obtain Social Securitybenefits, attending juvenile court pro-ceedings, and assisting individualswith their transportation, food, hous-ing, medication utilities, support andlegal assistance needs.

The Network has worked withseveral service areas as they imple-mented new services or fine tunedexisting services. The services pro-vided to these regions include tech-nical assistance in the following ar-eas: (1) developing and maintainingparent support activities; (2) promot-ing and maintaining parent involve-ment on local boards and committees;(3) developing child and adolescentregional services plans; (4) develop-ing policies and procedures for newchild and adolescent services; and (5)

MEANThiring staff to work in the new pro-grams.

In January 1996 the Networksuccessfully bid on and received acontract to implement, monitor andevaluate services for children andadolescents with serious emotionaldisabilities in Fulton County, Cityof Atlanta. Through a children andadolescent committee that includedinteragency members and commu-nity leaders, the regional board con-tracted for services that would com-prise a community-based system ofcare for children with emotionaldisorders. A mix of public and pri-vate organizations are responsiblefor the delivery of services. Thefoundation of this service de-livery systemcalled "Fulton'sChAMPs"is interagency and com-munity collaboration. The Networkworks with all agencies to ensure

coordination. A parent advisoryboard has been formed. All childrenplaced out-of-home and out-of-community are monitored and ev-ery effort is made -to return thesechildren to their local communities.Network representatives attend alladministrative and interagencymeetings. The Network was recentlyable to hire a parent who will meetwith each family whose child is inthe ChAMPS program and offer sup-port as well as monitoring customersatisfaction. The Network adminis--ters the flexible wrap-around fundsand maximizes these dollars by so-liciting community contributions.

Georgia Parent Support Networkmembers believe -that tremendousstrides toward family and consumerempowerment have been achievedsince the first CASSP initiative. How-ever, the needs of our families and

children are so great that what hasbeen accomplished is only the begin-ning. For lasting changes to occurfamilies and youth must be involvedat every level in every system. Fami-lies and youth must serve on boards,'advocate for their needs with theirelected officials, offer to testify, serveas.role models for other parents andnot be afraid to let their voices beheard.

SUE SMITH, Presi-dent and Chief Ex-ecutive Officer,Georgia ParentSupport Network,620 PeachtreeStreet, Suite 300E,Atlanta, Georgia Sue Smith30308; voice: (404)875-6801; fax: (404) 875-6755.

MONTAMontana is once again experienc-ing the heady exhilaration of

the Gold Rush era. One hundred yearsafter the mining bonanza of the1890's, we again find ourselves seek-ing goldthis time extracted fromthe bedrock of mental health care.The energy of the present is no dif-ferent than that of a century ago.Those who stand to profit promise themoonunparalleled changes in men-tal health services. Those whose liveswill be profoundly affected are anx-ious to believe the promises and arealso leery of the barren moonscapeshidden in the clouded words. As withthe first Gold Rush, voices of reasonand of caution are often drowned inthe. enthusiastic and unchecked en-ergy of hope. History often repeatsitself, and the specter of ghosttownsof individuals and familieswithout serviceslooms in the night-mares of many in Montana.

But all is not bad dreams and spec-ters in the night. The development ofa managed care system for Montan-ans with mental illness presents op-portunities as well. Commitment tothe development of community-based

NA'S MANAGED CARE GOL

services, reduced out-of-home carefor children, better outcomes for fami-lieseach of these depends upon awillingness to promote systemchange. The key is to be thoughtful,to listen to those most affected, tomonitor the impact, to celebrate whatis good and to change that whichcauses harm.

Montana began the journey tomanaging health care in the Medic-aid population through a series ofdecisions affecting the provision ofphysical health care. The success ofthese efforts to provide cost reductionand control of decisions for healthcare prompted examination of therunaway mental health services bud-get. Also, the frustration of state andlocal providers who coordinated men-tal health care prompted an "any portin a storm" mentality to shed the dif-ficulties associated with negotiatingthe troubled and uncharted waters ofsystem change.

Initially, several factors hinderedthe system change process. Prior to1995, the Montana Mental HealthDivision was located in the Depart-ment of Corrections. The Medicaid

D RUSHDivision was housed within the De-partment of.Social and RehabilitativeServices. Funding for mentaY healthservices was fractured between otherdepartments as well. In particular,children were funded through theDepartment for Family Services, De-partment of Health and the Office ofPublic Instruction, as well as otheragencies.

Many mental health services werecontracted to regional, private, non-profit mental health centers. Thesecenters provided priority services toadults with severely disabling mentalillnesses and children with seriousemotional disorders. These serviceswere funded through mental healthblock grants, Medicaid, and state-funded fee-for-service agreements.

The runaway Medicaid budgetraised the concern of people through-out the state. Children's servicesparticularly the costs of residentialcareskyrocketed. Legislation wasproposed in 1993 to eliminate the"Rule of One" funding mechanism bywhich children were deemed eligiblefor inpatient and residential servicesbased solely on their income. Advo-

FALL 1996 15

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cates and providers joined together torestructure the eligibility process withthe promise from state mental healthadministrators that the savings gen-erated would be re-routed to commu-nity-based alternatives. Two verypowerful ideas germinated from thesediscussions: (1) pool funding forchildren's services (key to the man-aged care process three years later)and (2) the creation of Managing Re-sources Montana (MRM)the firststep toward managed care for kids.

MRM is a community-based system that provides care to eligible chil-dren with .serious emotional disor-ders. The system was created througha cooperative interagency agreementbetween six state agencies. The MRMdesign included governance by re-gional teams composed of agency rep-resentatives, parents or parent advo-cates, service - providers andcommunity representatives. The planfor regional control garnered enthu-siastic support, however, the stateeventually pulled back and sought tocentralize control:

Despite the controversy surround-ing MRM, managed care forMotitana's children with mentalhealth needs is now a reality. Signifi-cant benefits resulted despite numer-ous flaws in the systems. Two of theregions developed community-basedservices, successfully limited residen-tial care by providing home-basedservices, involved families in mean-ingful participation, and developed aregional commitment to transformthe way business was conducted.With undaunted enthusiasm, one re-gion began to initiate programs thatbetter served the population. Moneymade more flexible by MRM rules wasdirected to a variety of services in-cluding respite, quick response casemanagement, therapeutic aides,wraparound services, and home-based care. Other regions approachedthe promise of change more cau-tiously. Administrators, geographicconsiderations and services already inthe region greatly affected the devel-opment of new services.

Response to MRM from parentsand providers was mixed. Access to

services was significantly limited byfiscal concerns. Regional interpreta-tions of policies caused political dis-sent. Families were .confused andwondered to whom they should turnfor information and guidance. Provid-ers were frustrated by the lack of con-trol in decision-making processes,and acute care facilities found the resi-dential treatment route to dischargeplanning had been blocked. Perhapsmost of all, both state and regional-participants took umbrage concern-ing issues related to control and re-sponsibility. Where new services wereinitiated, enthusiasm was high fromboth parents and providers. Casemanagement was required for all con-tracts and varied from region to re-gion in- implementation and form.The first steps into the managed careenvironment had been taken andMontana began tottering toward abigger goalfull scale developmentof a statewide mental health managedcare program.

Thus the stage was set for the de-velopment of a request for proposals(RFP) from managed care organiza-tions to manage available mentalhealth funds to serve both adults and.children. A Health Care FinancingAdministration 1915(b) waiver appli-cation was granted. Such a waiver al-lows Montana to operate its Medic-aid program in a way that does notcomply with all of the requirementsof federal law

The array of elements containedwithin Montana's RFP includes.pooled state funds, capitated rates,defined access by diagnosis, commu-nity-based services, state hospitalbeds (adults only, but a significantfactor), parent information, education

and outreach, a unique caveat forNative American involvement,school-based programming, assess-ment, emergency services and casemanagement. Utilization of local ex-pertiseincluding that of the fam-ilyis clearly set forth as one of theRFP's expectations. Companies' pro-posals must demonstrate how theywill develop local partnerships. Fam-ily members and consumers fear in-volvement in name only.

Bids to assume responsibility forMontana Mental Health Care are be-ing reviewed by a state-appointedevaluation committee. The commit-tee is guided by a set number of pointsaddressing six areas: program descrip-tion, implementation, organizationdescription, experience, resources,and commitments. Notably absentfrom this list is the evaluation of atransition plan that, arguably, is in-cluded within the overall programdescription.

Several areas of concern with theproposal have surfaced. From thechildren's services point of...View, amajor concern is the lack of protec-tion of children's dollars within thefunding mechanism. Family organi-zations such as Family Support Net-work struggle with defining a rolewithin the service delivery systemthat allows it to provide non-tradi-tional support services to parents.Medical necessity is a pivotal factorand its interpretation by the managedcare organization is key to the suc-cess of the program. The lure of profitat the expense of an under-servedpopulation frightens many. Access toservices by the working poor andstandards to protect children frombeing dropped from services arevague. Perhaps most frightening of allto most informed parents and provid-ers is the experience had by peers inother states.

All of these unresolved issues andmore are the stuff of nightmares. Man-aged care is here to stay, but questionsstill remain. Has the state of Montanarushed too quickly to implement anew concept? Montana will be thefirst state nationally to pull all men -tal health dollars, block grants, state

0VOUIME fa, NO.2

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hospital funding, community mentalhealth monies, and all Medicaid (butnot Medicaid general fund dollars)into a single contract.

Is it appropriate to push the en-velope and force change? Will thefirst year of implementation resultin chaotic or orderly service deliv-ery? From a provider perspective,can adjustments be made to formlegal provider networks within asignificantly abbreviated period oftime? Is there sufficient timesincethe release of the request for pro-posals in Augustto develop ad-equate proposals, evaluate theirmerits, negotiate a contract, andbegin implementation prior to Janu-ary 1, 1997? There are many whobelieve four months is simply tooshort a period of time to accomplishsuch significant tasks and to assure

FOCANT

quality care for Montanans withmental illnesses.

The issue of outcomes andplanned, careful scrutiny of the man-aged care organization's service deliv-ery system, once in place, was sadlyneglected in the preparation. Out-come tools and accountability re-ceived cursory review by the advisorycommittee. A sub-committee submit-ted a single report but no further dis-cussion occurred. Profit caps, griev-ance procedures, regional providernetworks, parent involvement andchildren passed to juvenile justice tosave money are concerns that nag atfamily members as promises pourforth from managed care organizationexecutives and state officials.

Meaningful discussions havebrought the state to the crossroads ofsystems change. Have the voices of

family members, consumers, parentsand providers been heard and takenseriously? Many of the recommenda-tions submitted have been ignored.Many people sought to slow down theprocess and to assure meaningfultransition to a system that has prom-ise. The repetition of historyrushingto mine goldis regrettably the clos-est image to what is happening in theBig Sky Country.

BARBARA SAMPLE,Project Director,Family SupportNetwork, P.O. Box21366, Billings,Montana 59104;voice: (406) 256-7783; voice (in-stateonly): (800) 355-9992; fax: (406) 256-9879.

Barbara Sample

PHILADELPHIA COUNTY DEVELOPS FAMILY-FRIENDLY

BEHAVIORAL MANAGED. CARE PLAN

T n January 1997 Pennsylvania willireplace fee-for-service Medicaidwith managed care for both physicaland behavioral health care in thesoutheast region of the state. Duringthe past three years, while the Statewas planning for the conversion tomanaged care, Philadelphia workedactively with both elected and admin-istrative state officials to assure thatthe conversion would allowPhiladelphia's behavioral health sys-tem to flourish. Because of the posi-tive relationships among the CountyOffice Mental Health and the fam-ily, consumer and advocate commu-nities, they provided leadership andsupport in working with all levelsof state government.

In part because of the efforts oflocal government and family advo-cates, Pennsylvania chose to "carveout" behavioral health from the physi-cal health contracts for managed care.The state offered each of the fivecounties in the southeast regionwhich includes Philadelphiatheoptions of creating a managed careentity for Medicaid-funded behavioral

health services, subcontracting be-havioral health services to existingmanaged companies or allowing thestate to manage the contract for be-havioral health care services. Amongthe counties, only Philadelphia haschosen to manage Medicaid funds.directly rather than working with ex-isting managed care companies.

Philadelphia County has devel-oped a behavioral managed care com-pany as a component of the Depart-ment of Public Health to respond tothe opportunity to manage Medicaidfunds. A major impetus for the deci-sion to create Community BehavioralHealth (CBH) was to preserve, ex-pand and improve the County's fam-ily- and consumer-guided public be-havioral health system. CBH is aquasi-governmental entity. It is one ofthree components of the City HealthDepartment's behavioral health sys-tem, which also includes the Officeof Mental Health and the Coordinat-ing Office of Drug and Alcohol andAlcohol Abuse Programs. All compo-nents are part of the Philadelphia Be-havioral Health System (BHS), which

reports to the Health Commissioner.Because Philadelphia's goal is to

develop a behavioral health systemthat effectively meets the needs ofchildren and their families, it has beenessential to assure the CASSP goalsand philosophy are integral to thenew system. CASSP goals are beingincorporated into the policy, opera-tional and advisory structures of thenew behavioral health system. Thenew system is using several mecha-nisms to assure that the developmentand delivery of children's behavioralhealth services will be guided by fami-lies to meet the needs of their chil-dren. These mechanisms include theactive participation of families whosechildren use behavioral services on allBehavioral Health Care committees,specialized service training and su-pervision for staff who overseechildren's services and the develop-ment of a Family Satisfaction Teamto assess directly the quality of ser-vices supported by the BehavioralHealth System.

The commitment to CASSP valuesis reflected in the composition of the

fAil 199617

'A'

Managed care systems should:

® meaningfully involve consumersand 'family members in the plan-ning, development, delivery, evalu-ation, -research and policy forma-tion of managed care -systems.,including the determination -of"Medically necessary' ° services;

n. respect consumer ChOice of ser-ivices, providers and treatment andassure consumer 'informed voluntary -consent. Individual treatmentplans should be based on the .pref-erences and needs of consumersand families with children;

ensure that consumers- receivenecessary legal and ethical Protec-tions and services;

proN.ride- education-to consum-.ers and family* members on theirrights and responsibilities;

establish *grievance, mediation,rbitration, and appeals ProCedures

to ,resolve consinner. disputes in atimely manner. Ombudsman ser-vices should be provided. Neces-sary senricesshOuld continue pend-ing °dispute resolution;'

III -support consumer rights andempowerment by providing educa-tion about, and access to, local self-help groups and protection and ad-vocacy organizations; and

ensure that confidentiality andprivacy of consumer health care in-formation is protected at all times,-particularly as electronic information ssystems develop and expand.Release of specific informationshould occur only with a signedrelease from either the recipient ofservices or their legal guardian/rep-resentative. :

. .

Excerpted from Principles for Systemsof Managed Care (1996). Center forMental Health Services, SubstanceAbuse and Mental Health Services Ad-ministration, U.S. Department of Healthand Human Services. See ordering infor-mation on page 5.

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. _

FOCI INT

committees that have a critical rolein policy development and opera-tions. The committees all have signifi-cant family representation and themembership of the committees is re-flective of the cultural composition ofthe populations to be enrolled.Philadelphia's mental health servicesystem has worked closely with fami-lies and consumers in all aspects ofpolicy development for most of thelast decade. The committees guidingthe Behavioral Health System havebeen created to assure that the newsystem reflects the HealthDepartment's commitment to con-sumer and family-driven service pro-vision. Members include a wide rangeof stakeholders, including families,providers, advocates, consumers andrepresentatives from several child-serving systems.

The committee structure also ac-knowledges the differences amongsystems of care for children andadults. In developing committees, itwas essential to assure that the voicesof children and their families were notoverwhelmed by advocates for adultswith behavioral health care needs.There is a Children's Services Com-mittee composed of families (bothparents and grandparents) of childrenwith emotional disorders, familieswho receive services from the localChildren and Youth Agency, familieswhose children use substance abuseservices, legal advocates for childrenand families, and representatives fromthe school district, the local childrenand youth agency, juvenile justice,and family court and service provid-ers. This committee has been devel-oped to provide advice and oversightto all aspects of Philadelphia's behav-ioral health system for children andtheir families. Families of childrenwho use behavioral health services arealso represented on every other com-mittee of the Behavioral Health Sys-tem, including the Consumer andFamily Task Force and the ProviderCredentialling Committee.

The operational structure of theBehavioral Health System also reflectsPhiladelphia's commitment to chil-dren with emotional disorders and

their families. A children's behavioralhealth specialist will routinely reportto the clinical director. The specialistwill ensure that the system reflectsCASSP values and is responsive tochildren and their families. While thespecialist will work closely with boththe mental health and substanceabuse specialists, the children's behav-ioral health specialist's work will notbe subsumed by their issues.

In addition, other staff will spe-cialize in the children's behavioralhealth system. Respectively, memberservice staff who will interact withfamilies and consumers, and servicemanagement staff who will work withproviders, will specialize in eitherchildren's or adult services. We be-lieve that this is a stronger model thanusing generalists who may regardchildren's issues as secondary to thoseof adults. The separation of servicesfor children and adults acknowledgesthat managing the children's systemrequires specialized knowledge andworks in partnership with other sys-tems such as education and childwelfare.

A third mechanism to assure thatfamilies have an active role in the Be-havioral Health System will bethrough the Family SatisfactionTeama group composed solely offamilies whose children use servicesand older adolescents who use behav-ioral health services. This team willbe supported by the Behavioral HealthSystem, but will be independent ofother administrative or establishedadvocacy agencies. It will be chargedwith working directly with familiesand children to monitor services andto make recommendations for im-provement. The Family SatisfactionTeam will visit programs to speak tochildren and adolescents and will so-licit information on services from thefamilies of children using behavioralhealth services. It is expected that thefeedback of the Family SatisfactionTeam will be critical to the improve-ment of the quality of services offeredthrough the Behavioral Health System.

The families of children who usethe Behavioral Health System willmake essential contributions to its

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development and operations. A suc-cessful managed care entity must useits resources wisely, investing only inservices that are accessible, acceptableand effective. It is impossible to de-sign and maintain a system that meetsthe needs of families and their chil-dren without close attention to theirvoices.

We believe that families will guidethe system in offering more effectiveand efficient services for children. Itis also quite likely that families will

FOCAINTidentify services that are not currentlyavailable in Philadelphia's existingservice system. The promise of pub-lic management of behavioral healthcare is the opportunity for re-invest-ment in the system. We believe it is amore appropriate model for publicservice than allowing private compa-nies to use public funds for corporateprofit. We expect that the family-driven system being created in Phila-delphia will, through its partnershipswith families, learn to provide ser-

vices most effectively. The result willbe the opportunity to re-invest sav-ings from more efficient and effectivebehavioral health services. The re-in-vestment funds will then be used toclose the gaps identified by families.

ESTELLE B. RICHMAN, M.A., Health. Com-missioner, Philadelphia Department ofPublic Health, 1600 Arch Street, 7thFloor, Philadelphia, Pennsylvania19103; (215) 686-5043 (voice); (215)685-4756 (fax).

CONSUME

onsumers, families and theiradvocates have been and must

continue to be significantly in-volved in the planning, develop-ment, operation and monitoring ofpublic mental health systems. Thepublic responsibility for Medicaidand other state, federal or local gov-ernment-funded services requires adegree of openness and informa-tion-sharing that is generally notfound in the private market.

The state can and 'should de-mand significant information frommanaged care companies on theirproduct, including outcomes andconsumer satisfaction data. Thestate should require managed carecompanies to significantly involveenrollees and advocacy organiza-tions in all aspects of their program.Families of children with seriousemotional disorders have developeda set of principles of family involve-ment in the development and opera-tion of managed care systems forchildren (see pages 25 and 26)..These principles should guide de-cisions about state policy.

Various mechanisms should beconsidered to obtain public input atevery stage of the development andimplementation of managed care forpeople in the public mental healthsector.

States should develop their planfor mental health managed care withsignificant and meaningful involve-ment of consumer, families and ad-vocates. To accomplish this:

R INVOLVEMENT IN MANAGED CARE

Include consumers, familiesand advocates on the planninggroup (commission, task force,workgroup, etc.) that will write thedraft plan.

Provide mental health advo-cates the opportunity to meet withMedicaid agency or other state offi-cials who are designing the new sys-tem and ensure that their views areconsidered.

Involve the state mental healthplanning council (established underPublic Law 99-660) in the plan's de-velopment and give it an ongoingrole to review and comment on themanaged care proposal and itsimplementation.

Establish an advisory board ofconsumer/survivors, families andadvocates for people with mental ill-ness to review and comment to theMedicaid agency and the state men-tal health authority on the require-ments and standards for managedcare plans and any stipulations thatwill become part of the contractswith such firms. The boards shouldinclude individuals covered by theprogram (i.e., Medicaid recipients)and should reflect the ethnic, racialand cultural diversity of the popu-lation served by the program.

States should provide the oppor-tunity for public input as the planis drafted and revised. To accom-plish this:

Allow citizens to obtain a copyof the proposal and provide them anopportunity to comment on it.

Hold (through the mentalhealth authority, Medicaid agencyand/or state legislature) well-publi-cized, accessible public hearings ondraft proposals to develop the broadparameters for such a system priorto establishing any managed careprogram.

Run public service announce-ments and publish a notice of intentin general circulation newspapers.

Expect to make changes to re-flect the views of the public.

Ongoing public involvement isessential. Public input cannot belimited to the planning stage. Oncethe managed care system is opera-tional, mechanisms are needed toguarantee ongoing input from thepublic. Some ways to achieve thisinclude formal involvement of con-sumers both at the state level andin managed care plans. Statesshould:

Set up a state-level consumer-oversight board to review imple-mentation of state managed care.Include consumers of mental healthservices, family members of chil-dren with serious emotional disor-ders and other advocates for peoplewith mental illness.

Require the managed care en-tity to establish consumer advisoryboardsincluding one with the spe-cific purpose of addressing mentalhealth issuesto provide feedbackon the program and make ongoingrecommendations regarding accessto and quality of services.

0FAIL 1996 19

Authorize the state mentalhealth planning council to reviewand comment on the implementa-tion of managed care for public-sec-tor mental health services and giveit meaningful opportunities to rec-ommend changes in the program'smanagement to the state Medicaidagency, mental health authority andlegislature.

II Require the state Medicaid,mental health or other appropriateagency to conduct consumer-satis-faction surveys on a regularly sched-uled basis (some face-to-face), todetermine if individuals are satisfiedwith the choices they have, theiraccess to care, the services they re-ceive and other aspects of the man-aged care program.

Require the managed care en-tity, as well, to conduct regularlyscheduled consumer-satisfaction sur-veys, including focus groups andsimilar activities, to obtain substan-tial consumer input, and to use theresults to improve its services.

Consumer rights. The responsibil-ity of government to protect the pub-licin this case, the consumer ofmental health servicescannot beabrogated. In designing managedcare, especially in contracts with for-profit firms or agreements with pri-vate nonprofit entities, the stateshould require that basic consumerrights are protected, that consumershave an easy way to file grievanceswith the managed care organizationand that a system of appeals assuresspeedy resolution at the state level.

FOCOINT

The following are a list of idealand recommended consumer rights.They are goals that advocates shouldurge states to adopt and implement.Some of these rights are establishedby law, but many are not.

No managed care entity maydiscriminate on the basis of disabil-ity, race, religion, national origin, in-come, gender or sexual orientation.

Consumers have the right tobe fully involved in all treatment de-cisions and to participate in the de-velopment of their service plan.

Consumers have the right togive or withhold consent to theirservices plan and to amend theirconsent as their plan is modified.

Children with serious emo-tional disorders should have an in-teragency, interdisciplinary servicesplan developed with their familyand approved by their parent orguardian.

Treatment plans must respectthe individual consumer's choice ofservice and service setting.

Consumers have the right torefuse any treatment they do not feelis appropriate and may not bedisenrolled because they have re-fused treatment.

Consumers may not be deniedservices that are appropriate to theirneeds because of their decision notto accept other services.

Managed care entities must en-sure confidentiality of records, guar-antee consumers full access to theirown records and protect individualprivacy.

El Consumers have the right toestablish psychiatric advance direc-tives or durable powers of attorneyspecifying how they wish to be treatedin an emergency or if they are inca-pacitated. The managed care entityshould be required to educate its pro-viders on the use of advance direc-tives.

Consumers have the right toappeal decisions about their treatmentwhen they disagree. ** The managedcare entity must have an effective,expeditious, accessible, fair and uni-form grievance procedure to allowconsumers to appeal decisions aboutcare they receive or services they aredenied.

Consumers have the right notto be disenrolled from the plan with-out just cause.

In the end, there will be manyvariations on managed care in statesystems. The most successful will bein states where policymakers and ad-vocates do not automatically resistnew concepts and ways of doing busi-ness, but at the same time remain trueto their principles and protect therights and needs of consumers as thestate implements reform.

Excerpted, with permission, fromManaging Managed Care for PubliclyFinanced Mental Health Sei-vices(November 1995), Judge David L.Bazelon Center for Mental HealthLaw. Ordering information is pro-vided on page 32.

President Clinton

PRESIDENT CLINTON ESTABLISHES MANAGED CARE COMMISSION

On September 5, ,1996 President Clinton signed an- Advisoryan executive order creating an-AdvisoCommission on Consumer Protection and Quality, in the Health Care Industry *TheCommission's purpose is to review changes occurring in the health care system and, whereappropriate, make recommendations on how best to promote and assure consumerproteC-tion and health care quality: The Advisory Commission will be appointed by the Presidentand will include no more than 20 representatives from: health care professions, institutionalhealth care providers, _health care purchasers, state government, consumers and experts inhealth care quality financing and administration. The Commission will study: (1) con-

.

sumer protection; (2) changing quality; and (3) availability of treatment and services in a rapidly changinghealth care system. The Advisory Commission will submit a preliminary report to the - President by September30, 1997 and a final report-18 months from the date of its first meeting.

0VOLUME 10,10.2

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Hof:11NTI 1 , 'A.

ENDING DISCRIMINATION IN HEALTH INSURANCE

THROUGH FEDERAL LAW:

A CHILDREN'S MENTAL HEALTH PERSPECTIVE

The.Washington Post. Friday, September 6. 1996.

Last night, senators rebuffed in a pre-.vious-attempt to improve insurancecoverage for the mentally ill succeededin passing a more modest proposal toreduce the gap with physical healthinsurance. The measure; offered by-Sens. Pete. y, Domenici (R-N.M.) andPaul D. .Wellstone (D:-Minn.).... [was]approved by 82 to 15... [and] was at-tached as an amendment to a fiscal1997 spending bill (page A18).

The Washingtan Post,Thersday. September 12,1996.

...the House voted 392 to .17 to goalong with initiatives, approved lastweek by the Senate....instruct[ing] itsnegotiators to accept the Senate Prb-posals as part of a Spendingbill....While the 'instructions are notbinding on the negotiators, the size ofthe vote:.. increased prospects for ap-proval.... (page A6).

"This is an incredible victory, " I saidto New York Times reporter RobertPear, who used that quote to con-clude his September 19th article an-nouncing the survival of parity. TheDomenici-Wellstone Mental HealthParity Amendment to the Veteran'sAdministration and Department ofHousing and Urban Developthentappropriations bill was approved bythe House and Senate ConferenceCommittee, soared through Con-gress and went forward to thePresident's desk. The President's sig-nature on September 26th turnedthe bill into law, a hope into policy.

The implications of passingthis bill go far beyond its actualprovisions, although those are asignificant improVement over cut.rent practices. This version ofDomenici-Wellstone requires thatthe. aggregate annual and lifetimebenefit limits in health insuranceplans be the same for mental and

physical health care. These require-ments will take effect on January 1,1998, and will apply to companiesthat have more than fifty employees.

After a long summer of struggle,Senators Doinenici and Wellstonebrought the issue of mental healthparity back before Congress as anamendment to an important appro-priations bill. Their earlier and morecomprehensive parity 'amendment,attached to the Kassebaum-KennedyHealth Insurance Portability and Ac-countability Act of 1996 was defeatedby heavy opposition from businessand health insurance interests. As theCurrent; compromise version ofDomeniCi-Wellstone moved forwardPresident Clinton (in a letter to theHouse Speaker) urged its passage,writing that "People with mental ill-ness have faced discrimination inhealth insurance coverage for far toolong; it is time that we take steps toend this inequity"

The National Mental Health As-sociation (NMHA) applauds thePresident's stand. With the President'ssignature, discriminatory lifetime ag-gregate limits and annual caps onmental health, care in private healthinsurance contracts will be prohibited.by law. Although this is a far cry fromcomplete parity, it is a significant stepforward and a cause for celebration.These incremental gains move us inthe right direction, toward economiccommon sense for the nation and fair-ness for the millions of children,adults, and families whose well-beingand productivity are dependent ontheir ability to receive appropriatemental health treatment and services.

This article looks at two dimen-sions of health insurance parity (par-ity with physical health benefits andparity as an inclusive concept thatapplies to a broad range of mentalhealth problems). Both context and

values are addressed as the stage isset for reviewing the struggle overthe Domenici-Wellstone ParityAmendment to the Health InsurancePortability and Accountability Act.That struggle was a clear illustrationof how difficult it is to achieve jus-tice and equality for mental healthconsumers and their families.

Although parity advocates wereunable' to influence the final con-figuration of the Kassebaum-Kennedy Act, their work was not invain. Advocates showed the nationand its legislators that there is a largeand solid core of citizens who arewilling to come forward in supportof .parity. Senators Domenici andWellstone persevered and the chil-dren, adults, and families who werelosers in the early battle will be win-ners at the end of the war. Advocatesare challenged to continue theirwork so that more comprehensivelegislation in the future can be builtaround the achievements of today.

CONTEXT AND VALUES.Millions of Americans have gone

without adequate or appropriatehealth insurance coverage for manyyears. Some have had no insuranceat all, perhaps because they are notin the work force or because theirchildren have pre-existing condi-tions that bar them from joining anemployer's health plan. Otherpeople have had insurance that doesnot cover treatment for pre-existingillness, or that locks them into a jobfor fear of losing coverage, or thatcovers them when they are well butdrops them when they become ill.

Historically, coverage for treat-ment of mental disorders has offeredeven less. Many insurance planshave provided no coverage at allunless required to do so by contractor by law. Those benefits packages

QFALL 1991

21 OCCT AllA 11 A 111

that do cover mental conditions of-ten set arbitrary limits on the num-ber of covered treatments or on thedollars available per year or per life-time. Furthermore, even these lim-ited benefits may be denied in theabsence of one of a very few psychi-atric diagnoses. This is a commonand short-sighted exclusionarymechanism that allows insurancecompanies to avoid paying for ser-vices for children whose emotionaldisorders do not fall within "accept-able" diagnostic parameters. It hasalso proved to be a major access bar-rier for people whose ethnic or cul-tural backgrounds lead them to ex-press emotional pain in ways thatdiffer from those recognized bymainstream diagnosticians.

The National Mental Health As-sociation (NMHA), as an advocacyorganization, has taken a strongstand in favor of parity. Our posi-tion reflects a firm belief that pri-vate health insurance as currently-constituted discriminates againstand victimizes some of America'smost vulnerable citizens. We haveconcluded that:

2111 It is unjust and poor publicpolicy to allow discriminatory lim-its on health care benefits, discrimi-natory co-payments, or discrimina-tory annual and lifetime capstargeting mental health services forchildren and adults with mentalhealth needs. No group of Ameri-can children or adults should facediscrimination in health insurance.

All American workers andtheir families have a right to acces-sible and quality mental health ben-efits set at the same level as physi-cal health benefits in insuranceplans.

ill Clinical necessity rather thanspecific diagnosis should determineaccess to mental health benefits. Par-ity provisions that are limited to spe-cific disorders discriminate againstcountless people, especially chil-dren, who have very serious men-tal health treatment needs.

Some of our most basic values

rod INT

support this position. The NMHAhas long held that: (1) Justice de-mands that everyone, regardless ofdisability, has the rights and respon-sibilities of full participation in so-ciety; (2) Mental health is essentialto the development and realizationof every person's full potential; (3)Mental health treatment should nothave more limits on access and re-imbursements than other illnesses;(4) Children with or at risk of seri-ous emotional -disorders and theirfamilies must have access to highquality, community-based, inte-grated systems of care; (5) All peopleshould have access to a full array ofhigh quality, community-based, in-tegrated mental health services, re-gardless of ability to pay; (6) Thepromotion of mental health and theprevention of.mental disorders is theresponsibility of every person andsocial institution in the community;and (7) NMHA values inclusivenessand sees broad-based citizen partici-pation as essential to communitymental health. .

NMHA is not alone in its supportof parity or in its broad definition ofmental health needs that should beaddressed comprehensively -underhealth insurance policies. TheBazelon Center for Mental HealthLaw, Federation of Families forChildren's Mental Health, AmericanPsychological Association; NationalCommunity Mental Health CareCouncil and American PsychiatricAssociation and-others share our vi-sion. These groups are unambiguousin their support of the principle thatno group of people needing mentalhealth services should be discrimi-nated against in health insurance.

NMHA was founded by CliffordBeers, a man who spent time in theback wards of state mental institutionsin the early 1900's. We believe stronglythat the needs of people with seriousmental illnesses should never be puton the back burner by policymakersor health care providers. We will notminimize the needs and concerns ofchildren and families whose needs are

great although they may not carry adiagnosis that is identified with adisease of the brain. Primary con-sumers and their families must allbe afforded the assistance they needand all persons must be treated withdignity and respect.

THE HEALTH INSURANCEREFORM ACT.

On August 24, 1996 PresidentClinton signed the Health Portabil-ity and Accountability Act of 1996into law. By then, all references tomental health "parity"- had beendropped from the bill. Earlier thissummer, we at the National MentalHealth Association and many of ourcolleagues in advocacy in Washing-ton, D.C. had thought that there wasa real chance to end health insur-ance discrimination against childrenand adults with mental diSorders.Under the.passionate and. bipartisanleadership of Senators PeteDomenici (R-NM) and: PaulWellstone (D-MN), the Senate hadpassed the "Domenici-WellstoneParity Amendment" to the larger"Kassebaum-Kennedy" bill. TheApril 17 vote was 68 to 32 for par-ity. Mental health advocates for chil-dren and adults alike were thrilled,and they responded to the victorywith a massive surge of activity. De-termined to build on the momen-tum of this win, they lobbied forpassage in the House and theypushed the media to ke-ep the issueof parity before the public.

Unfortunately, other forces werealso at work. Between that historicApril evening and July 30, when theHouse and Senate conferees agreedto drop even an already compro-mised version of "parity" from theKassebaum-Kennedy bill, some ofthe most powerful and well-fi-nanced business and manufaCturingpolitical forces in this countryfought hard and openly againstmental health parity. Among themwere the U.S. Chamber of Com-merce, the National Association ofManufacturers, the National Federa-

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tion of Independent Businesses andthe ER1SA Industry Committee.

Background. All of us can re-late some horror stories abouthealth insurance, even if we do notspeak about the discriminatorypractices that affect people whosetreatment needs relate to mentaldisorders rather than physicalones. The Health Insurance Re-form Act, sponsored by SenatorsNancy Kassebaum (R-KS) and Ed-ward Kennedy (D-MA), presentedan opportunity to craft a mentalhealth parity amendment thatwould prohibit discriminatorycost control practices in privatehealth insurance plans.. SenatorsDomenici and Wellstone, whosefamilies include members with se-vere mental illness, decided tocraft that amendment. Both knowfirsthand what discrimination andstigma can do to individuals andfamilies who must fight for ad-equate treatment and social ser-vices in America's two-tieredhealth care system.

Domenici and Wellstone werejoined by many of their Senate col-leagues, notably Senators KentConrad (D-ND) and Alan Simpson(R-WY), in promoting passage ofthe amendment. RepresentativeMarge Roukema (R -NJ) was astrong supporter in the House ofRepresentatives.

Within the Executive Branch,Tipper Gore continued in her lead-ership role as the Administration'stenacious mental health advocate.She focused great energy on the par-ity amendment, writing opinion ar-ticles and giving television inter-views to the national media.

Assessment. The battle for par-ity during the summer of 1996 canbe viewed as having had severalfronts. One was the struggle withlarge American business intereststhat were resistant to any change atall. This struggle was partially suc-cessful in that there has been somemovement towards fairness inhealth insurance coverage.

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FEDEIJO iHEA PARR A'

The Health Insurance Reform Actprovides some relief for many Ameri-cans, including those who strugglewith mental disorders. The legislationas finally passed bans insurance com-panies from excluding people fromcoverage because of pre-existing con-ditions. These exclusion practiceshave been a huge obstacle for manyfamilies with children who have seri-ous emotional disorders and needextensive treatment and support. Thebill also provides for insurance port-ability, thus ending "job. lock" formany privately insured health careconsumers.

A second front was the struggle tokeep legislative language in the par-ity amendment itself inclusive enoughto remain relevant for millions of chil-dren with intensive mental healthneeds and their families. There wasalways a possibility that parity wouldbe extended only to people with cer-tain severe disorders or diagnoses.Such a limitation would have effeC-tively denied treatment access to largenumbers of children and familiesneeding intensive services. In the end,the parity amendment retained moreinclusive language.

Arguments For and Against Pas-sage. To me personally, the most com-pelling argument for passage was thesimple issue of fairness, the case forsocial justice. In our society, childrenand adults with mental disorders suf-fer from stigma as well as from thesymptoms of their illnesses, makingthem easy targets for discriminatoryhealth insurance practices. Insurersmay have found they could get awaywith denying benefits to this hiddenand vulnerable population, but suchpractices are immoral and unjust..

There are, of course, also socialand economic benefits to be gainedas a result of insurance parity. Weknow far more than we once didabout how to help children and adultswith mental disorders, and how toassist their families.

In the case of children with severeemotional disorders, we know thatintegrated systems of care and flex-

ible wraparound services can savelives and money. Culturally appro-priate services that respect familyvalues and community strengthscan yield large savings over thecourse of a lifetime. In the case ofadults, we know that employerswho offer comprehensive mentalhealth benefits find that employeeproductivity increases, health im-proves, and health care costs maybe reduced. When people are deniedmental health coverage under pri-vate insurance, their treatmentneeds do not vanish. The costs aremerely shifted onto the verystrained and often fragmented pub-lic sector systems.

Arguments against passage ofthe parity amendments came frompowerful lobbying interests. Oppo-nents of the Domenici-WellstoneAmendment raised two major argu-ments which are certain to riseagain.

The role of government. BusineSsinterests argued that requiring men-tal health parity would constitute afederal "mandate" and thereforewould be an inappropriate intrusionby government. into the priVatehealth insurance marketplace. Thishas been a popular argument amonglegislators in recent years. A paritylaw is a mandate, as are the laws thatmandate fairness in hiring practicesrelated to people with disabilities.Many people would argue that theconcepts of fairness and justice needto be kept alive and well in Ameri-can public policy, and few peopleactually wish to see protective lawseliminated.

The cost of parity. Business in-terests argued that providing equalaccess to physical and mental healthservices would increase the cost ofhealth insurance for everyone andwould leave fewer people with in-surance coverage. Citing data froman actuarial study commissioned bythe Association of Private Pensionand Welfare Plans, the businesslobby's position was that employerscould not afford to pay for better

23[ALL 1996

sq INN An, ma as 400, 1. ....

benefits and consumers would haveto pay larger premiums with passageof federal parity legislation.

Again, this is a popular argu-ment, but the opposition to parityexaggerated the -cost issue. Anycost increase. will be but a smallfraction of current premiums, andinsurance allows costs to be spreadover large groups of people, limit-ing the .effect on any one indi-vidual or group. The September6th Washington Post story quotedabove indicates that costs associ-ated with 'passage of the currentDomenici-Wellstone Amendmentare very low. The Congressi6nalBudget Office has estimated thatprivate health insurance premi-ums will increase by 0.4 percent;employer-paid'premiums will in-crease by 0.16 percent. That worksout to about .sixty cents permontha very minor sum. It isright; it is reasonable; and it is alsoinexpensive to extend mentalhealth services to those childrenand adults who need them.

MOVING ON:. A CHALLENGEAND AN OPPORTUNITY.

Whenever health care policy isdebated at any level of governmentor in private industry, surely it willinclude attention to the needs ofAmericans with mental disorders.Some states already have moved toachieve parity for their citizens. InMaryland and Minnesota, for ex-ample, inclusive parity legislationhas been passed that allows forcoverage based on individual ser-vice needs. These states have thepotential to greatly increase accessof children and adolescents in in-sured families to affordable men-tal health services. The advantagesof such a public policy approachare explained by Linda Raines,executive director of the MentalHealth Association of Maryland:"What broad-based parity did forchildren and families in Marylandwas to provide increased opportuni-ties for early intervention, instead

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of waiting for emotional disorders tobecome severe. The law is a step toincreasing the availability of treat-ment to children and adolescentswhose problems may well becomemore severe and expensive to treatover time. Maryland's inclusive par-ity law can bring expanded access andtimely care to children and familieswith a variety of mental healthneeds."

In several other states, paritylegislation has been passed, but itis less useful since it only targetsspecific severe and persistent ill-nesses. As a rule, such laws do notproduce fair coverage for childrenwith intensive mental health treat-ment needs and for their families.

At the federal level, SenatorsDomenici and Wellstone have con-tinued to focus Congressional at-tention toward health insuranceand coverage for mental health ser--vices. The new amendment is amodification of the originalDomenici-Wellstone amendment-and is a less comprehensive ap-proach to parity, but the Senatorsare powerful and committed advo-cates who are leading us toward vic-tory in a hostile environment. In anera of "incrementalism" we canhope to celebrate important stepsforward- toward fairness and eco-nomic sense.

The fight for parity is really justthe start- of the battle. This is espe-cially the case in the arena of men-tal health services for children andfamilies. Barbara Huff, executivedirector of the Federation of Fami-lies for Children's Mental Health,expresses it well: "The long haulfight will be to educate managed be-havioral health care providers aboutthe technology of systems of care, theeffectiveness of family-centered treat-ment, and the cost savings that resultwhen wraparound services are deliv-ered to families that respect theirnatural strengths and values. Paritywithout the development, and then ac-cessibility, of comprehensive children'smental health services in communi-

ties will be an empty promise formany children and families with themost intensive needs."

There is a great deal to do andwe are challenged to move aheadin a unified manner. When we helpthe child, we may produce ahealthier adult. When we help afamily, we may reap great societalbenefits. When we base treatmenton individual needs, we-may findthat an improved quality of life isaccompanied by a decreased drainon community resources. Paritymakes sense from every point ofviewnot least because it meetsthe chief criterion articulated bythe National Mental Health Asso-ciationthat of social justice.

With the President's signature,the sanction. of law has beenbrought to the concept of parity.Something that is right and justand good is being entered into thelaw of the land. A discriminatorypractice will be ended and it willbe harder for insurance companiesto justify the continuation of otherunjust practices.

The struggle for complete par-ity must continue, but advocateshave every reason to pause to re-flect on their achievements. Wehave good reason to celebrate thisincredible, hard-won victory.

MICHAEL M. FAENZA,

M.S.S.W., Presidentand Chief Execu-tive Officer, Na-tional MentalHealth Associa-tion, 1021 PrinceStreet, Alexandria,Virginia 22314-2971; voice: (703) 684-7722; fax:(703) 684-5968.

Author's Note: Special thanks to BethSteel for her very skillful editing of thisarticle and to Al Guida, NMHA VicePresident of Governmeni Affairs, for histireless advocacy for children's mentalhealth needs on Capitol Hill.

Michael Faenza

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REMARKS BY THE PRESIDENT

WHITE HOUSE ROSE GARDEN SIGNING CEREMONY

September 26, 1996

THE PRESIDENT: This bill requires insurance com-panies to set the same annual and lifetime coveragelimits for mental illness that now apply- to physicalillness. No more double standards; it's time that-lawand insurance practices caught up with science. Iam convinced that the more we deal with this issue; 4.

Atthe more we will come to see all kinds of medical *problems as part of a seamless web, not easily divis-ible into mental and physical categories. The morewe learn, the more we will know that.

Today, we try to bring our institutional responseto those challenges up to what we now know andwhat we also know is morally right. I want to thankTipper Gore for her passionate, persistent, unrelent-ing advocacy of this position to the President andothers. (Laughter and applause.) When I walked up hereyou know, there's always a marked contrast when yousee someone happy and you see someone sad. I know no one in whom the contrast is more marked. I would doanything to see Tipper Gore as happy as she was today. (Laughter) She has fought for all of you who believe in thisposition. (Applause.)

I would also like. to say a very personal word of thanks for the quiet and courageous dignity with whichSenator Domenici and Senator Wellstone have brought to bear their own life's experience on this great endeavor.They have made a profound impact on me and on their colleagues and on our country at some considerable effort

to themselves, and I thank them very much for it. Thank you. (Applause.)

Editor's Note: Excerpted from President Clinton's remarks on signing the VA-HUD Appropriations Bill (within which

the mental health parity bill was incorporated).

_C-

I

MENTAL HEALTH PARITY: U.S SENATE SPEECHES

fOinly two per-cent of Ameri-cans with mentalillness are cov-ered with thesame degree ofcoverage as ifthey got tubercu-

Sen. Domenici losis or cancerinstead of manic-depression. orschizophrenia. You can walk downany street in urban American andyou will find them. It is time to givethese people access to care theyneed, and as you see them in urbanAmerica sleeping on grates andother things, you should realize thatthey probably started out as won-

derful teenage children in some beau-tiful family. And when the costs gotprohibitive and the behavior uncon-trollable, they are abandoned. In fact,you find more of them in jails than inthe institutions which we ought tohave to help them. Most studies re-veal that most of the severely men-tally ill are in prisons or county or cityjails because of misbehavior than in[treatment] places. Part of that is be-cause resources are not applied, andpart of the reason resources are notapplied is because the insurancecompanies...say, "How do we makemoney?" So, if we lessen the cover-age for mental health we get a betterbargain for people who want cover-

age for the other things." But I amsubmitting that sooner or later wehave to say to them that you all haveto cover them. If you are coveringphysical illness and they get 6months of hospitalization, you haveto do the same for mentally illpeople.

Senator Pete Domenici(R-NM). (excerpted]

Our amendment would requirehealth plans to provide parity intheir coverage of physical and men-tal health. Plans would be prohib-ited from requiring copays, ordeductibles, for mental health ben-efits, or establishing lifetime limits

bill 1999 2 5 BERT r.nov Al/A II A ne r

RIPOINTFED.EITALMENTA141EAqifPARITyii12

for-mental healthbenefits, or estab-lishing visit limi-tations for mentalhealth' servicesunless the samerestrictions apply

Sen: Wellstoneto. other healthservices-.

Mr: PreSident- and` colleagues,there are severafarguments for re-quiring parity fOr rnental.healthser-vices: First, we now have cost-effectdie treatments for mental: illnessesand high rates of sUcceSsTare beingachieved across the spectrum-of.agnosis. For example, 80 percent of.individuals with depression respondto treatment. SecOnd of all,. mentalillness results in physical illness, in-ability to work; impaired relation-ships and sometimes crime and.homelessness.

'Would it not be better to-end thediscrimination and have less of thehomelessness? Would:it not be bet-.ter to end the discrimination and en-able people to work and be produe=tive citizens? And finally, Mr.President, mental health services arealready part of health delivery in theUnited States.

Let .us have no doubt about it,.this amendment leaves all decisionsabout the delivery of services to theprivate marketplace. The aniend-ment does not require-the provisionof mental health services to employ-.ees specify what care should be pro-vided, interfere.with the discretionof employers andealth plans tonegotiate reimbursement rates asthey:.see fit, or.mandate the use ofany particular kind of delivery ofneeded care: _

What this amendment calls foris- just parity. Mental illness hastouched many of our .families andmany of our friends. It is.for thisreason and many others that it is nota partisan issue. Mental illness is aproblem affecting all sectors ofAmerican society. It shows up inboth the rural and urban areas. It

affects men and women, teenagers andthe .elderly, every ethnic group andpeople in every tax bracket. It can beeffectively treated just like heart dis-ease or diabetes. Treatment not onlysaves lives but. it also saves dollars.That is why this amendnient is soimportant.

Colleagues, please _support us.Please end the discrimination. That iswhat this amendment is all about: Ido not usually do this on the floor ofthe. Senate,. but *I would like -to dedi-cate.my,remarkS to my brother "who .has struggled with' mental illnessmost hiS whole life: He-is doing great.now

I yield the, floor.'Senator Paul Wellstone.

. (D-MN). [excerpted]. .

Let me just tell.you -that about4 years- ago amost beautifulgirl .our. fam-ily; the.niece ofmy wifemywife's twin

Sen. Siinpson ;sister's Baughter,..whcim we

had watched grow and mature fromher birthleft,our midst. She was adancer; she was an artist; she was a.poet; she was a guitarist; she- was-a.singer; she.was-the rainbow of life.

We did not get or understand the.signals in time, and the signals were

-very clear as we all look back nowout,of -sheer guilt and. anguish. She_was tough minded, independent,loving, strong and forceful. Shewould come_ into your kitchen andjust cook up a batch and leave thestuff in the sink and family wouldsay, "Why doesn't Susan clean up:afterwards?'" And then, "Whydoesn't Susan work? How old willshe be before she ever works?".

She began to withdraw and thenshe went into some religious and al-most cultish activities and she hada child. And that is a beautiful child.I know that child. That is the- won-

derful _part of it now because Su-san is gone. And after years ofreaching out to us in her way andus not hearing and us not know-ing, she one day decisively pur-chased a pistol and a few hourslater purchased the ammunition.and went to an isolated field, re-moved her shoes, sat in a crouchedposition in Bowling Green, Ken-tucky and blew her chest away.

That is what sometimes happensto these people, and we think, "Well,but they should have tried to dosomething for themselves. ""--We thought we were doing

`something for her. We tholigh she-Was finally doing it for herself. Shewas taking medication, and it wasworking. BUt then something,something unknown*, entered hermind and her life and she decidednot to take the medicationknowing what would: happen ifshe did notand then her tragicplan of ultimate rejection came topass:

.... [Mere is not a soul- in thisChamber that has not been griev-ously affetted in some way bythese things. It is time for healing.

. It is time for understanding morethan anything. It is time to minis-ter. It is time to love and to becompassionate and time to learnso much more about these- tragicthings. For these are the peoplewho you know and see eYery day,and they are making it, and theynever did before, but they are now.If we can :put this in .this- bill .inthis way with this language, Ithink it would be a tremendousbenefit to themand-they are ourfirst chargeand to the rest of usin society..

I thank the Chair.Senator Alan- Simpson

(R-WY). [excerpted]

26VOLUME 10, 110.2 BEST COPY AVAILABLE

FOCAINT

PRINCIPLES OF FAMILY INVOLVEMENT IN THE DEVELOPMENT AND

OPERATION OF MANAGED HEALTH AND MENTAL HEALTH CARE SYSTEMS

FOR CHILDREN AND YOUTH

Federation of Families for Children's Mental Health, Adopted July 1995

These principles were developed through an interactive process that involvedfamilies from a wide diversity of communities representing the spectrum offamilies raising children with mental health needs, emotional or behavioral

problems or mental disorders. These principles represent a consensus.Individual communities may have additional concerns and the realization

of these principles will necessarily be adapted to local conditions.

Policy Issues. Family membersI- must be part of the decision-mak-ing team responsible for managed-care system development. This ap-plies to both the public and privatesectors. The base of parent advocacyneeds to be broadened to ensure bothdepth and diversity of perspectives inplanning, policy development, imple-mentation, and evaluation of man-aged care systems. Families reflectingthe full economic, cultural, linguis-tic, and racial diversity who are or willbe receiving managed care servicesmust be included in development ofthe systems.

State agencies must be aggressivein ensuring managed care systemsinvolve families in an ongoing way.Systems must develop services for thebenefit of children and families. Themanaged care system must includehealth care professionals who havespecialized knowledge and skills totreat the many faces of children withmental health needs. Family membersmust have appropriate representationon advisory boards and other groupsthat have the power to influence themanaged care system. Concepts andprinciples of family. involvement needto be institutionalized throughout themanaged care system.

Managed care systems must beconsistent with the principles of thesystem of care. This includes: (1) pre-serving the benefits of interagencycollaboration: (2) involvement offamily members in decision-makingabout the design, delivery, and evalu-ation of services; (3) supporting a full

continuum of care; and (4) provid-ing individualized services tailored tothe specific needs of each child andfamily (including holistic and alter-native health care needs justified bymedical necessity or personal reli-gious beliefs).

Families need to be involved inthe evaluation and assessment of thesuccess of managed care systems. Wemust be sure that presenting problemsare evaluated and stabilized so thatour children can benefit from behav-ioral health care. Family membersmust be members of quality manage-ment teams and included in the pro-cess of determining outcome mea-sures and data collection systems.Family members must be included inestablishing "best practices" based ontheir experiences with the system ofcare.

Family representatives need to beincluded on the planning teams forall conferences, training and techni-cal assistance concerning managedcare.

Services-Related Concerns.Families must receive the informationand training to be empowered to ad-vocate for themselves. This includes:(1) information about managed careprinciples, practices, and systems de-sign; (2) strategies for family involve-ment; and (3) education in the im-portance of and opportunities forinfluencing systems change. Effortsmust be made to provide effectiveoutreach to youth and their familiesin inner city and rural communitiesin order for them to have equal op-

portunity to access information andtraining.

Families must have a definitiverole in the development of theirchild's care plan and service needs.The "gatekeeping" function of themanaged care system must take intoconsideration and not compromisethe role of the family as decision-maker for the child. For example,how utilization review of hospitaliza-tions or outpatient treatment ishandled affects the family's capacityto protect their child's best interest;The managed care system must haveflexible time frames for services. "Onesize fits all" does not work.

The providers in the managed caresystem must be prepared to allowfamilies to participate at whateverlevel they feel comfortable. Front lineworkers must be well-trained in meet-ing family needs and responsivenessto families has to be infused into theorganizational culture. Service coor-dinators (case managers) need to re-ceive in-service training from familymembers concerning wraparoundand other appropriate services to sup-port families. Service coordinators(case managers) need to pay particu-lar attention to the voices of youthduring in-service training.

Managed care systems must sup-port the principles of wraparound (in-cluding "zero reject" and family-cen-tered care) and cover thenon-traditional services designed anddelivered through this approach.Managed care systems must ensurethat a full array of community-based

FAR 1996 2 7

FOCAINT

child and family support service op-tions is developed before limitationson hospitalization and residential careare imposed or when capitation con-trols resources for mental health care.Continuation of relationships familymembers have developed with men-tal health providers must be protectedas managed. care is introduced to re-place current fee-for-service systems.

Managed care systems (both pub-lic and private) must have a compre-hensive and easy to use appeals pro-cess for families to access when theydisagree with the service plan or otherdecisions made by the managed careorganization.

Financial Considerations. Thereneeds to be money set aside by themanaged care system to support andtrain family organizations as con-sumer-based entities that have a keyrole in monitoring the managed- caresystem, as well as to be involved in

complaint review and policy develop-ment. These conditions need to be inthe. requests for applications put outby the mental health authorities.Family organizations should receivefunds from the managed care systemto support advocacy for children withmental health needs, train providers,and help families take responsibilityfor tracking down services and uti-lizing the system effectively.

Regardless of whether the man-aged care organization is a public orprivate entity, any cost savings shouldbe reinvested in children's mentalhealth services or the system of care. .

Managed care systems need toensure families are not bearing thefinancial risk.

Managed care systems must coverearly intervention services and otherservices designed to prevent escala-tion of mental health, problems.

Managed care systems must estab-

lish and maintain mechanisms forensuring flexible funds are availableto support crisis intervention, respitecare, wraparound and other and non-traditional services designs and deliv-ery strategies.

Resources must be provided tobreak down barriers to participationof families who lack ample financialresources. Common barriers thatfamilies face include: lack of funds,credit cards or cash on hand; lack oftransportation, child care and appro-priate clothing.

For additional information on theprocess through which- these prin-ciples were developed, or for infor-mation about the Federation pleasecontact: Federation of Families forChildren's Mental Health, 1021 PrinceStreet, Alexandria, Virginia 22314-2971; voice: (703) 684-7710; fax:(703) 836-1040.

OPERATI

IN A

cc r ultural competence" may be de-l... fined as the state of being capable

of functioning in the context of cul-tural difference. Cross has describedcultural competence as a set of con-gruent practice skills, attitudes, poli-cies and structures that come togetherand thereby enable-professionals, anagency or a larger system to work ef-fectively in cross-cultural situations(Cross, 1988). Managed care organi-zations have an obligation to system-atically express inclusiveness of theculturally diverse populations withintheir respective service areas. Healthcare organizations must expect thatevery aspect of the organization hasthe capacity to deliver high qualityservices to all consumers: Servicesmust be respectful and responsive toconsumers' cultural values and lan-guage needs. All consumers are en-titled to receive culturally proficientmental health services. It is our ethi-cal, moral and professional responsi-bility to ensure that all mental healthconsumers have access to clinically,

ONALIZING CULTURAL COM

MANAGED CARE ENV1RON

culturally and linguistically proficientservices.

The development of a culturallyproficient system of care requires act-ing in accordance with the followingfundamental principle: An agency ororganization must systematically ex-press inclusiveness of the culturallydiverse populations to be served. Theorganization's staff must expect thatevery aspect of the organization hasthe capacity to delivery high qualityservices to all consumers. The mes-sage of inclusiveness must come fromthe top of the organization on down.It cannot be left to the individual staffmember. If the consumer perceivesthat the organization's commitment toinclusiveness extends throughout theorganization they will, of course, givethe organization their business. If, onthe other hand, the clinician steps outinto the hall and calls the building'sjanitor in to translate for the client,the client will readily perceive that theorganization does not have a commit-ment to inclusivenessand these cli-

PETENCY

MENT

ents will vote with their feet.The acquisition of cultural com-

petence is a developmental process.Individuals must first look within anddevelop an understanding of theirown cultural influences. Thereafterthey can begin to pursue professionalgrowth, skills and knowledge whiChthey can then incorporate into theirwork. The focus is on developingskills to assess clients, from astrengths-based perspective, withinthe context of the client's culture,fam-ily and community.

Examples of the strengths per-spective include: (1) viewing the fam-ily as partners in the treatment pro-cess; (2) addressing the value ofspirituality; (3) multi-dimensionalassessments; (4) using language thatis familiar to consumers; and (5) fa-miliarity with how communities ofcolor understand and use health care.Further, the strengths-based perspec-tive acknowledges differences inhealth-seeking behaviors and may de-emphasize Western medical models.

28V01011E10,10.2

CORE CULTURALCOMPETENCIES NEEDED BYBEHAVIORAL HEALTHORGANIZATIONS.

Organizations must develop repu-tations that they are inclusive and in-viting of culturally diverse popula-tions. They must have staff andservices that distinguish them fromtheir competitors. Staff may assumethatsince their organization's nameis well-knownas soon as they opentheir doors, culturally diverse clien-tele will come in droves. In fact, how-ever, consumers will likely have de-cided which organization isresponsive long before they open theirdoors. If the organization has no his-tory of advancing the quality of lifein the community through _localchurches and schools, culturally di-verse peoples are unlikely to use theorganization's services. The agencymust earn the respect of the commu-nity. This respect translates into reci-procity: "You give, we give."

Providers can position themselvesin the marketplace by familiarizingthemselves with local census informa-tion about population profiles by age,ethnicity, gender and census tracts.

Behavioral health organizationsshould develop targeted strategicplans for service in specific regions.Moreover, it is important to give par-ticular services the flexibility to shapethemselves to meet the needs of thetargeted communities.

Flexible criteria for accessing ser-vices will ensure that the organizationcan accommodate the different ways.cultures express mental health andhealth needs. Truly accessible systementry points will have staff with clini-cal, cultural, and language compe-tency skills that are reflective of theregion's population.

The organization's policies andpractices should enable staff to truly-put the consumer first. Staff must beallowed to do things slightly differ-ently than the norm to really reachconsumers. For example, a consumercomes in and seeks assistance con-cerning a personal crisis. The staffersuccessfully helps resolve the crisis.Upon returning six months later con-

FOCIAINT

cerning another: matter, the client ex-pects to see the same individual withwhom trust has already been estab-lished. The system should be flexibleenough to accommodate theConsumer's desire to see the same staffperson.

Management information systemsshould track clients throughout orga-niz-ations by ethnicity, language, di-agnosis, age and by treatment modal-ity. This will give management a toolto assess the organization's effective-ness in treating clients in the mosteffective and least costly leYel of care..

ACQUIRING CORE ...

CULTURAL COMPETENCIES.Assess the organization's strengths

and weaknesses:Ill Do staffing patterns reflect the

most common languages needed in theregions served at all levels of the orga-nization (clerical, clinical, case manage-ment, supervisors, management)?

II Do staff possess the skills and li-censure required for compliance withspecific state or federal requirements?

Are the organization's servicemodalities culturally acceptable for aconsumer -driven system?

. How user friendly is the orga-nization from various access points(i.e., inpatient, emergency, residential;outpatient)? Do clients who are notfluent in English get the same oppor-tunity for quality treatment? Do non-English-speaking clients access theorganization at the least restrictivelevel of care?

Managed care providers typicallypromote a centralized point of accessto their. systems. Such an approacheffectively denies access to many po-tential consumers. If one's communityis the barrio, and the point of entry isten miles away, the health care orga-nization is wholly inaccessible. Accesspoints should be decentralized andtruly in the local community.

BUILDING CORE CULTURALCOMPETENCIES.

In order to build the needed com-petencies within the organization,assess current staff with respect totheir cross-cultural skills, language

fluency, credentials, and knowledgebase of targeted ethnic communities.If there is a knowledge base to workfrom, invest in training in cross-cul-tural,- community-based non-tradi-tional modalities across disciplinesand programs. Invite consumer and-stakeholder feedback in planning pro-cesses and develop consumer -basedoutcome measures.

BUYING AND SHARINGCORE COMPETENCIES.

If cross- cultural and languageskills are not available within the or-

. ganization, purchase the necessarycompetencies by re-writing job de7scriptions to test for the clinical andcommunity-based knowledge re-quired to perform the needed 'ser-vices. Invest in ongoing staff devel-opment of existing and new staff tomaintain the skill levelS needed.Maintain a multidisciplinary-cultur-ally diverse focus and`cross-train staffwhere possible. Contract with indi-viduals possessing needed competen-ci6 for the performance of non -rou-tine jobs. Develop strategic alliancesWith other providers and 'share thecompetencies needed occasionally orfor a special targeted project. Give upa measure of control and open tradi-tional boundaries between and'amongorganizations. Share staff resourcesand skills.

LANGUAGE FACTORS INCLINICAL INTERVENTIONS.

It is critically important to haveclinical staff speak the same languageas the client and; if possible, to havea shared cultural history. Cliniciansfrequently mis-interpret the behaviorof non-English-speaking clients. Forexample, if a client behaves-in a self-effacing manner, the clinician mayinterpret this behavior- as guarded,uncooperative, or that the client feelsless intelligent or lacks confidence.Similarly, the clinician may mis-inter-pret body movements that 'are effortsto. communicate. The clinician

asinterpret the body movement as mo-tor retardation, depression, physicaltension or-anxiety.

There are also difficulties associ-

FAIL 1996 29

FOCIAINT

ated with assessing English-speakingclients when that is not their primarylanguage. Speaking a non-dominantlanguage diminishes the speaker'semotional involvement and heightensthe likelihood of emotional with-drawal or detachment. The confusionthat accompanies times of high stressis heightened when communicatingin a non-dominant language is fac-tored into the mix. Clients may givedifferent responses to the same ques-tion when asked in their native lan-guage and in English. It is criticallyimportant to recognize that languageis not merely a method of communi-cation; language is also a realitythrough which individuals perceiveand organize their worlds.

Organizations should, if at all pos-sible, avoid using interpreters. Onthose occasions where interpreters areused, it will be very difficult to estab-lish a sense of bonding between thespeakers. The actual content of theinterview will be highly dependent onthe quality and training of the inter-preter. Children and adolescentsshould never be used as interpretersfor their parents as it has the effect ofempowering children anddisempowering parents. Children are

simply not psychologically preparedfor the responsibility placed uponthem in the role of translating thekinds of highly personal informationthat may emerge during a mentalhealth assessment or treatment.

CULTURAL COMPETENCYINCREASES MANAGED CAREORGANIZATIONS'COMPETITIVENESS.

Cultural competency improves anorganization's ability to engage eth-nically diverse consumers and fami-lies in a meaningful way and reducesthe revolving door syndrome (use ofemergency and other more costly ser-vices). Cultural competency prin-ciples promote provider accountabil-ity, coordination and collaboration.Promoting culturally appropriatepractice also helps capture Medicaidbeneficiaries who would otherwise goto competitors or use the system onlyat the most costly level of care. Clini-cal and 'cultural competency pro-motes quality care for all clients andassists mental health staff to meettheir ethical and professional stan-dards of care.

In sum,. culturally competentpractice is good for consumers and

providers alike. It recognizes that weall have one or more cultures and ac-knowledges our emotions, concerns,values and personal principles. Cul-turally competent practice is person-ally and professionally rewarding, aswell as essential to ensuring a man-aged care organization's competitiveposition in today's marketplace.

JOSIE T. ROMERO,

L.C.S.W., retired onSeptember 6, 1996from her positionas Division Direc-tor, Santa ClaraCounty MentalHealth Depart-ment. Josieworked for over 28 years in the fieldof mental health including serving asManager of Family and Children'sDivision. She is now a private con-sultant in cultural competency plan-ning and staff development. Josie maybe reached at: 5253 Edenvale Avenue,San Jose, California 95136; (408) 281-3346 (voice); (408) 229-8327 (fax).

REFERENCE

Cross, T. (1988, Fall). Services to minoritypopulations: Cultural competencecontinuum. Focal Point, p. 1.

Josie Romero

A SYSTEM IN TMANAGED CARE AND CASSPPRINCIPLES.CASSP (Child and Adolescent ServiceSystem Program) system of care val-ues and principles are as relevant intoday's managed care environment asthey were in the environment of adecade ago. CASSP philosophy hasguided states in the development ofservice delivery for children and ado-lescents with serious emotional dis-orders. The CASSP system of care isan ideal system. It includes a compre-hensive range of mental health andother necessary services that are or-ganized into a coordinated networkto meet the multiple and changingneeds of these children and their fami-lies. These values and principles wereused to bring professionals and par-ents together to create a common Ian-

RANSITION: CASSP PRINCguage. This commonality guided lo-cal communities to change the direc-tion of service delivery to childrenwith emotional disorders and theirfamilies. Communities can use theCASSP framework to make sure thatmanaged care models are consistentwith the best interests of children andfamilies.

WHY MANAGED CARE?Public health, mental health and

chemical dependency services areundergoing rapid and profoundchanges due to managed care. Themove of public services into managedcare began with the promise it heldfor states to control the costs of Med;icaid services. Managed care has ap-pealed to payers and legislators alikebecause it focuses on the cost and ef-

IDLES REVISITEDfectiveness of government programs.Cost control is clearly a legitimateconcern. Any entity that is respon-sible for making sure that there areenough dollars to appropriately serveeach individual under its care mustdeal with cost. Each provider must beable to afford the services it provides.But without a commitment by (a) keypolicymakers, (b) parents, (c) advo-cates, and (d) service providers, toCASSP principles and values, man-aged care models can be driven bycost alone.

There is no "one" model of man-aged care. Instead, managed care prin-ciples are applied to the specific cir-cumstances of each locale. Thechallenge to our communities in anera of reduced resources and increas-ing needs is to be vigilant and stay

0VOLUME 1U, NO.2

30

involved in the development ofemerging models. States and localcommunities have the opportunity toshape a locally designed managed sys-tem of care that is both cost effectiveand quality driven. In the public sec-tor. state and local governments havebeen responsible for the public trust.Governments typically demonstratethat trust through the inclusion ofcitizens in extensive community plan-ning and evaluation of delivery sys-tems. As new managed care partner-ships evolve between the public andprivate sector, we, the community,must not lose this citizen participa-tion. We must be insistent that ourpolicymakers create formal mecha-nisms that require continued citizeninvolvement.

As a child and family system, wemust become very proficient in usingthe tools of managed care to focus onprevention, flexibility, quality im-provement processes, effective utili-zation and outcome-oriented treat-ment for children and families. Thefollowing describes one community'slearning about seizing the opportu-nities and facing the challenges ofmanaged mental health care forchildren.

LITNOMAH COUNTY,OREGON: A CASE EXAMPLE.

Multnomah County, Oregon is alarge, diverse, urban community of631,000 persons. About 80,000 per-sons live in poverty, half of whom arcchildren. This County has had a longcommitment through funding andpolicy to serve vulnerable childrenand families. It uses community-es-tablished benchmarks to guide policyand financial investments for ahealthy and safe community. EPSDT(Early and Periodic Screening, Diag-nosis and Treatment) mental healthservices have been well accessed forMedicaid children and their families.The Multnomah County PartnersProject, a recently concluded five yearmulti-system, multi-partner project,pioneered managing individualizedmental health services to children andtheir families. Services were targetedto 150 children with the highest men-

FOCAINT

1114E'AiriAtEttiitt:.CENTEKOMMENTA a -

LAUNCHESINFANAGENCARUINFNATIV

The Managed Care Initiative is a project designed to support the development of managed care expertise in public sector managed care ser-

vice administrators and staff. The Initiative,lunded through the Center forMental Health Services and coordinated through the Center for MentalHealth Policy and Services Research at the University of Pennsylvania, tar-gets mental health administrators and clinical professionals as the audi-ence for-a multi-level intervention of education, planning and cooperativeventures with. managed care: companies and mental health services: TheInitiative is comprised of two components: a central, coordinating projectand contracts with five separate professional mental health organizations.

The central project, currently underway, is working to identify,-_ clarifyand summarize -existing. Standards' of mental health services and clinicalcompetencies for mental' hialth'professionals within the parameters of adultservices, Child and adolescent services, elderly services, services for His-

,

panic Americans, and services for. African Americans. The goal is to iden-tify existing training and educational materials that currently exist for mentalhealth professionals and then to develop additional training materiaLS neededby professionals to practice effectively with these populations within thecontext.of managed tare.

For general information on the Managed Care Initiative contact: MarianMullahy, Project Coordinator, Center far Mentai Health Policy and.ServicesResearch,- University of Pennsylvania Medical Center, Department of Psy-chiatry,chiatry, 7th- Floor, 3600 Market Street, Philadelphia, Pennsylvania 19104-2648;. (215) 6623531" (voice) or (215) 349-8715 (fax). For informationspecific to the project's focus.on child and adolescent'services contact: SybilGoldman, M.S.W, Associate Director, National Technical Assistance Cen-ter for Children's Mental Health, Georgetown University Child Develop-ment Center, 3307 M Street, N.W., Washington, D.C. 20007 3935;.(202)687-5000 (voice); (202) 687-1954 (faX).

tal, emotional and behavioral needs.This is the community context inwhich the County entered into anagreement with the state of Oregonto provide managed mental healthcare to Medicaid-eligible children.

Oregon is a state that has system-atically moved into managed healthcare for its Medicaid population. Asone of several Oregon managed careinitiatives, the Oregon Mental Healthand Developmental Disabilities Divi-sion entered into an agreement withMultnomah County's Department ofCommunity and Family Services toimplement a federal waiver (1915B)on April 1, 1996. The Department ofCommunity and Family Services is alarge social services delivery agencythat provides a broad array of contractand direct services. The federalwaiver, called the "Multnomah

CAPCare (Child and AdolescentPlan)," is to provide mental healthservices to Medicaid-eligible childrenand adolescents ages 0-20 who livein Multnomah County.

CAPCare is responsible for pro-viding medically necessary 24 hoururgent and emergency care, acute psy-chiatric inpatient care, assessmentand evaluation, outpatient servicesand case management services. In-cluded in these benefits are flexibleservice approaches such as wrap-around services that are individual-ized to the child's treatment needs.CAPCare offers outpatient servicesthrough a provider panel of 28 com-munity-based agencies. These ser-vices are reimbursed through a dis-counted fee for service. CAPCareprovides acute care services throughseveral hospital systems. These ser-

MU III 3 1

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vices are reimbursed throughsubcapitation arrangements.CAPCare is the next step in takingwhat we have learned through thePartners Project and EPSDT systemreform and applying these principlesto the larger Medicaid population ofchildren and youth.

WORKING TOGETHER.The transition process to managed

care has required the commitmentand patience of the community.Change is difficult and it is neverwithout its bumps. But the changealso is an opportunity to work to-gether to use the potential of man-aged care to create a more flexible,efficient, quality-driven children's sys-tem. This transition has involved cre-ating the vision for the system andoperationalizing the plan.

Like many public systems, thiscommunity had years of experienceserving children with serious mentalhealth needs and their families. TheDepartment of Community and Fam-ily Services, hereafter referred to asthe "Department," asked our commu-nity to plan CAPCare with us to de-sign a system of care that could takefull advantage of the. flexibility ofmanaged care tools. The Departmentmade sure that parents, advocates,mental health, education, child wel-fare, health, juvenile justice, and pro-viders sat together to design the typeof system we wanted. We used CASSPprinciples as the core framework.Everyone invested hundreds of hoursto declare what the vision would be.

But, as the saying goes, "The devilis in the details." As a system, we hadto deal with new and challenging de-mands that ranged from fiscal andbudget issues and information ex-change to changes in the fundamen-tal' values and expectations of deliv-ering care. These challenges includedresolving disagreements about reim-bursements and payment methods.There were critical information sys-tem operations that had to be put intoplace at the state, at the department,and at the provider agencies to enableCAPCare to run. CAPCare policy andprocedures had to be developed that

would establish a common under-standing of admission, discharge, andcontinuing care criteria. It takes timeand experience to resolve these typesof issues. CAPCare continues to re-fine its operations as it matures as asystem. During this transition,CAPCare's greatest responsibility hasbeen to make sure that children andfamilies continue to receive necessarycare.

INNOVATIVE APPROACHES.We have seen an opportunity with

CAPCare to use the learning from thePartners Project to advance managedcare approaches that better serve chil-dren who have serious mental, emo-tional and behavioral disorders andtheir families. The Department hascontinued its collaboration with par-ents and advocates, child welfare,education, juvenile justice and privatefoundations to develop innovative ap-proaches to coordinated care.

Rooted in CASSP values and prin-ciples, the approaches are intended tooptimize coordinated service deliveryto high need, at-risk children and ado-lescents whom we all serve in com-mon. At times, it has been difficult tosort through with the partners theimpact that CAPCare and managedcare in general has had on our sys-tems. Luckily, the partners have ashared history of providing effectivecare through collaboration and use

this knowledge to keep the processmoving. Parents and advocate repre-sentatives have played a strong rolein this process. They have been un-wavering in their commitment to holdCAPCare accountable for how themodel would work and improve ser-vices to children.

A SHIFT IN FOCUS.Managed care is changing the way

the community thinks about provid-ing mental health services to childrenand families. Under managed care,there are financial incentives tounderserve children and families. Tooffset this potential, the CAPCaredelivery system must implementquality assurance/improvement pro-cesses that monitor under- and over-utilization of care. CAPCare must alsocontinue to educate parents and fami-lies so they are informed consumersof managed care. The Department hasused its. entry into managed care asan opportunity to engage the commu-nity of children's mental health pro-viders and other interested persons inlooking at best practices and estab-lishing standards of care. This hascreated a process for the system tolook at improving the cost and qual-ity of care to children. By doing this,we obligate the system to look at eachchild in relation to community stan-dards to see how an individual treat-ment is fitting the needs for that childand family.

The clinical providers forCAPCare were engaged in developingthe authorization of payment process.Prior to CAPCare, mental health ser-vices to Medicaid-eligible children inMultnomah County were paid for bythe provider billing the state for ser-vices on an as-needed basis. Now,Multnomah CAPCare receives a pre-paid capitated monthly payment fromthe state to provide these services toCAPCare enrollees. The moneycomes to CAPCare based on an allot-ment of Medicaid funds for each en-rolled child every month. Out of thisfund, CAPCare is responsible for pro-viding all medically-necessary ser-vices to CAPCare enrollees. CAPCareauthorizes payment to the provider

VOW 10, NO.232

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for.services to CAPCare enrollees asindicated by medical necessity.

The implementation of CAPCarehas imposed a discipline on the de-partment and its provider panel. Bothhave had to develop quality improve-ment processes that monitor over-and under-utilization. Providers haveexperienced pressure to increase effi-ciencies because of the loss of incomefrom CAPCare's discounted fees forservice. The quality assurance/im-provement and utilization manage-ment processes assure CAPCare isproviding medically necessary andappropriate services to each child asthe system is developing efficiencies.Clinicians and administrators arelearning new skills to become profi-cient in managed care tools. CAPCarecontinues to educate and engage par-ents and families to become activeconsumers of managed care services.

THE ROLE OF PARENTS ANDADVOCATES.

Parents and advocates play a criti-cal role while shifts are occurringunder managed care. They tell uswhat works, what doesn't and why.We have found it to be crucial thatCAPCare provides parents and otherinterested persons a regular forum to

ask questions and challenge processesthat are developing. CAP Care hassought technical assistance from par-ents in how to communicate user-friendly written information to fami-lies. It also includes parents and otherstakeholders as members of theCAPCare quality improvement com-mittee.

The child and family communityservice delivery system has pocketsof excellence where the role of par-ents and advocates is routinely as-sured. Parents and advocates are in-cluded in planning and advisorycommittees and clinical care teams.This role is supported through stateand county mandates and providerpractices. However, we do not yethave broad, routine parent and advo-cate participation. The opportunityunder managed care is to use muchneeded customer feedback from par-ents and families to improve services.CONCLUSION.

Many states and communities aremoving to managed tare systemsnot only for health, mental health andchemical dependency servicesbutalso for child welfare services. Simi-.larly, there is an emerging trend inlong-term care systems to embracemanaged care. These changes provide

an opportunity and a challenge to re-visit and reaffirm the CASSP philoso-phy. CASSP principles and values arecompatible with the managed carefocus on cost, customer satisfactionand quality processes. However, it isvital that a managed care system de-sign to provide services to vulnerablechildren and families establishes qual-ity goals to create a child-centered,community-based, culturally compe-tent and consumer-driven system.

Parents and advocates have anopportunity to play a critical role inhow states and-local communities re-spond to funding and priority changesat the local, state and national level.Stay involved, stay informed and learnas much as you can about this thingcalled "managed care."

JUDY ROBISON, M.A.,

M.S.W., ManagedCare Cbordinator,Director's Office,Multnomah CountyDepartment of Corn-munity and FamilyServices, 421 S.W.Sixth Avenue, Suite Judy Robison-

600, Portland, Oregon 97204; voice:(503) 248-3691x4047; TDD: (503) 248 -3598; fax: (503) 248-3926.

MANAGED CARE IN EVOLUTION: ONE FAMILY'S EXPERIENCES

T am a single parent of two boys,1 David, 17 and Isaiah, 15', living inFlagstaff, Arizona. We have had ex-tensive involvement with the state-run health care system, from both themedical and mental health perspec-tive. Our first hand experience is thatmental health services deliveredthrough managed care better meet theneeds of children and their families.

My oldest son, David, was bornwith the fibula missing in his rightleg and a benign, recurring tumor inhis left forearm. He wears a prosthe-sis to compensate for the differencein leg lengths. There is no way to con-trol the growth of the tumor in hisarm without taking-most of themuscle and damaging the nerves.David has had five operations to con-

trol the growth of the tumor and hun-dreds of hours of physical therapyto strengthen his arm and hand. Wehave been able to get whateverDavid has needed with very fewproblems. Most of his surgery hasbeen performed locally.

On the other hand, my youngestchild, Isaiah, was diagnosed as hav-ing a serious emotional disorder at ayoung age and finding care for himhas been very difficult.

When David and Isaiah were 5 and3 years old, their father and I divorcedand I went back to work. Unfortunately,I had to stop working after about a year,because I was constantly being calledto the day care centerand later to theschool or juvenile detention centerdue to Isaiah's behavior.

Services for Isaiah were virtuallynon-existent. In 1989, at the age of 8,Isaiah ended up in a therapeuticgroup home in Phoenix, which isabout two-and-a-half hours south ofFlagstaff. He was there for more thana year until I decided he needed tocome home and be with his familymore than he needed their treatment.

Under Medicaid, the state of Ari-zona has delivered health serviceswithin a managed care frameworksince 1982. However, it wasn't until1990 that mental health services wereprovided to eligible people under theage of 21.

Under managed care, treatmentfor David's arm and leg has been noharder to get than with any other in-surance company and, basically, we

Mil 199833-

have been pleased with the quality ofthe services he has received.

But, prior to 1990, mental healthservices were delivered under a fee-for-service model. Our providers op-erated in the traditional wayap-pointments between 8:00 A.M. and5:00 P.M., Monday through Friday. Inrural areas, such as where we live,personnel and specialty services werelimited.

The move to managed care createdmuch chaos because it was imple-mented so quickly. Parents, provid-ers, and state agencies quickly sawthat they had no choice but to worktogether and plan the best implemen-tation possible. After two years, thedust settled and everyone was a littlemore comfortable under the newmodel. It goes without saying thatthose two years were hell for our chil-dren and youth throughout the state.

After suffering through this hell,in early 1992, I decided that I wasgoing to get involved and learn anddo as much as I could. I joinedM.I.K.I.D., an organization that pro-vides information and advocacy forchildren with mental health probleMs.

In September 1993, after a year ofnegotiation, an intergovernmentalagreement was signed between the

FOCIfilbINT

five state agencies that serve childrenand families. The guiding principlesfor the agreement are that servicesshould be collaborative, flexible, fam-ily-focused, community-based andculturally appropriate. My continuingrole in the intergovernmental agree-ment process is to sit on the execu-tive committee that oversees workgroups that focus on identified areasof planning and modification.

One of our accomplishments todate has been the development of asingle purchase of care contract thatallows providers within the state towork under one contract. This differsdramatically from the former systemin which providers contracted sepa-rately with each agency. With themove toward a single contract, wehope to improve the quality of ser-vices delivered to our children andfamilies.

Another successful innovation isthe development of an intensive casemanagement pilot program that be-gan operation in October 1995. Thepilot program pulls together a teamof case managers from various agen-cies who work together to designatea single case manager for each childand family.

As I stated before, David has been

able to get just about anything heneeds. He can get a prosthesis madespecifically for him. No one else canbenefit from his personally tailored,unique prosthesis. This is the sametype of service delivery that I believeour children and youth with mentalhealth needs should have as well. Ser-vices must be carefully prescribed andfashioned to the individual. So far Isee that, under a managed care model,families have the opportunity for in-put in treatment planning and servicedefinition, which in turn results in asystem that provides for cost effi-ciency, accountability, individualizedtreatments and quality outcomes.

Over the last four years Isaiah hasbeen able to receive the individual-ized treatment that meets his needsprovided within our own community!The progress he has made is just won-derful. Isaiah is a delightful and happyyoung man.

TERI SANDERS is a statewide advocate forM.I.K.I.D., a family organization work-ing with children's mental health issuesin Arizona. M.I.K.I.D. advocates forchildren and youth within all areas ofneed and offers support and educationto families and professionals.

MANAGED HE

RESOURCES FORSystematic Approaches to Mental

Health Care in the Private Sector forChildren, Adolescents, and Their Fami-lies: Managed Care Organizations andService Providers (1996), excerpted atpages 1 9, is the report of a study offive sites chosen to represent the stateof the art in private sector continuumsof managed children's mental healthcare. Authored by Ira S. Lourie, M.D.,Steven W. Howe, M.S.W. and LindaL. Roebuck, M.S.S.VV., this mono-graph provides a detailed descriptionof (a) two managed care organizationsand (b) three service provider agen-cies. Each of these organizations hassuccessfully learned to work within amanaged care environment and tooffer its own managed care mental

ALTH CARE MONOGRAPHS AND REPORTS:

PLANNERS, POLICYMAKERShealth products to children and fami-lies. The report may be obtained from:National Technical Assistance Centerfor Child Mental Health, Center forChild Health and Mental HealthPolicy, Georgetown University ChildDevelopment Center, 3307 M Street,N.W, Washington, D.C. 20007-3935;(202) 687-5000 (voice).

Managing Managed Care for Pub-licly Financed Mental Health Services(1995) offers an overview of what apublicly financed managed care sys-tem may look like. Authors ChrisKoyanagi, Ira Burnim, Joseph Manesand Robert Moon emphasize thatmanaged care in the public mentalhealth system is different than thatused in employer-based health insur-

AND ADVOCATESance. In general, the population in thepublic sector has more serious disabil-ity and mental health needs (oftencompounded by poverty and, even,homelessness) than the privately in-sured population. Further, the stateshave final responsibility for peoplewho have no other method of access-ing services.

In addition to describing con-sumer involvement in public mentalhealth systems, Managing ManagedCare describes possible benefits de-signs, discusses considerations instructuring a managed care system,reviews financial issues, and describesthe need to develop outcome mea-sures that will promote quality ser-vices. Managing Managed Care may

0VOLUME 10, 1101 34

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be ordered from the following: Publi-cations Desk, Bazelon Center forMental Health Law. 1101 FifteenthStreet, N.W. Suite 1212, Washington.D.C. 20005-5002: (202) 467-5730(voice): (202) 467-4232 (TDD);(202) 223-0409 (fax).

Managing Behavioral Health Carefor Children and Youth: A FamilyAdvocate's Guide is the just-published(August 1996) product of a collabo-rative effort between the Federationof Families for Children's MentalHealth and the Bazelon Center forMental Health Law. Authored by TrinaW. Osher (Federation of Families)and Chris Koyanagi and RhodaSchulzinger (Bazelon Center). thismonograph explains the concept ofmanaged care, offers strategies forchild and family advocates to becomeinvolved in shaping the design ofmanaged care systems, and includesan extensive glossary of phrases usedin discussions about managed care.Four handouts are included as appen-dices with the suggestion that they bedisseminated by family advocates tomanaged care policymakers.

Your Family and Managed Care: AGuide for Families of Children withMental. Emotional or Behavioral Dis-orders is a clearly written booklet thatexplains the workings, advantagesand pitfalls of managed care. YourFamily and Managed Care, as well asManaging Behavioral Health Care forChildren and Youth: A FamilyAdvocate's Guide, are available in En-glish or Spanish and may be orderedfrom the Publications Desk at theBazelon Center for Mental Health Law(see above).

Health Care Reform TrackingProject: Tracking State Health CareReforms as They Affect Children andAdolescents with Emotional Disordersand Their FamiliesThe 1995 StateSurvey describes the results of abaseline survey of states to identifyand describe current state heath carereforms that include mental healthservices. The baseline survey alsoidentified technical assistance mate-rials related to developing and imple-menting health care reforms (such asrequests for proposals. capitation rate-

setting methods. and level of care cri-teria). The Health Care Reform Track-ing Project is a five-year project de-signed to track and analyze statehealth care reform initiatives as theyaffect children and adolescents withmental. emotional or behavioral dis-orders and their families. The 1996monograph may be ordered from:Research and Training Center forChildren's Mental Health, FloridaMental Health Institute, University ofSouth Florida, 13301 Bruce B. DownsBlvd., Tampa, Florida 33612-3899;(813) 974-6419 (voice).

Finding a Way Through the Laby-rinth: Medicaid Managed Care for Chil-dren in Southwest Brooklyn examinesissues of enrollment, education, ac-cess and the services offered by man-aged care plans to Medicaid recipientsin Southwest Brooklyn. New YorkCity launched a Medicaid managedcare project called the SouthwestBrooklyn Demonstration (a) to inves-tigate the impact of universal enroll-ment of Medicaid recipients into pre-paid managed care programs and (b)to meet the requirements of NewYork's 1991 Managed Care Act.Among other requirements, the Actmandates that one-half of New YorkState's Medicaid recipients be enrolledin managed care plans by 1997. Thereport includes key study findings aswell as extensive recommendationsdesigned to increase the quality andcomprehensiveness of the care pro-vided by the Medicaid Managed Careprogram. Finding a Way Through theLabyrinth may be obtained from thefollowing: Citizens' Committee forChildren of New York, 105 East 22ndStreet, New York, New York 10010;(212) 673-1800 (voice); (212) 979-5063 (fax).

What Legislators Need to KnowAbout Managed Care (1994) addressesfour key questions: (1) What is man-aged care?; (2) What are the types ofmanaged care organizations?: (3)How have states implemented man-aged care programs; and (4) What ismanaged care's role in national healthcare reform? The report profiles fivestate programs that use managed carestrategies. The monograph, authored I

by Shelda L. Harden. may be orderedfrom the following: National Confer-ence of State Legislatures. 1560Broadway, Suite 700, Denver, Colo-rado 80202: (303) 830-2200 (voice):(303) 863-8003 (fax).

In June 1996 the United StatesGeneral Accounting Office releasedHealth Insurance for Children: PrivateInsurance Coverage Continues to De-teriorate. This report to the U.S.Senate's Subcommittee on Childrenand Families. Committee on Laborand Human Resources examined thefollowing: (a) the decline in heathinsurance coverage for poor children:(b) the number of children in work-ing families dependent upon Medic-aid; (c) the number of uninsured chil-dren eligible for Medicaid but notenrolled: and (d) why families of un-insured but Medicaid-eligible chil-dren might not be seeking Medicaidcoverage for their children.

In an earlier (1995). report to theU.S. House of Representatives' Com-mittee on Commerce, the UnitedStates General Accounting Office ex-amined Arizona's experience in imple-menting a statewide managed careprogram. More than 14 years ago,

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'ffective immediately; indi-viduAIS with deafness or other

hearing impairments may reachthe Research 'arid Training.on Fainily SuPportand Children'sMental Health through the Or-egon Telecommunications. RelayService. Both TT and.VOice userscan initiate callS through: the Re-lay, ServiCe. The toll-free-accessnumbers are :. (800) 735 -2900(TTY) and.:(800) .735'4232(voice). Please have thisResearchand "Training. Center's= telephonenumber ((503) 725-4040) onhand for the Relay Service: If Re-search and Training. Center staffare not immediatelY aVailable,they will return yo'tir :.call:On.theRelay Service::

RFST cnPv AVAILABLE nil Moog R.c

FOCIA1NT

Arizona was the first state to obtainapproval from the Health Care Fi-nancing Administration (HCFA) todevelop and implement a mandatorystatewide Medicaid managed care sys-tem. Arizona Medicaid: CompetitionAmong Managed Care Plans LowersProgram Costs discusses: (1) theprogram's cost containment experi-ence; (2) the role of health plan com-petition in the program's cost contain-ment success; (3) the-effect of costcontainment on beneficiary access to

appropriate care; and (4) lessonsabout Arizona's cost containment suc-cess that could apply to other states'Medicaid programs. The last two re-ports may be ordered from: U.S. Gen-eral Accounting Office, P.O. Box 6015,Gaithersburg, Maryland 20884-6015;(202) 512-6000 (voice); (301) 413-0006 (TDD); (301) 258-4066 (fax).

Finally, the Center for MentalHealth Services, Substance Abuse andMental Health Services Administra-tion, U.S. Department of Health and

Human Services, has produced anumber of publications that addressmanaged care issues. Free courtesycopies of these publications are avail-able. A managed care publications listand order form may be obtained from:National Mental Health ServicesKnowledge Exchange Network, P.O.Box 42490, Washington, D.C. 20015;(800) 789-2647 (voice); or, on theWorld Wide Web at: http://www.mentalhealth.org/

THE IMPACT 0

he Children's Supplemental Secu-rity y Income (SSI) program will be

dramatically redesigned andchildren's eligibility significantly re-duced as a result of the welfare reformbill passed by Congress and signed byPresident Clinton on August 22,1996. The program will be cut by $8.2billion and, over the next six years,315,000 low-income children withdisabilities will lose or be denied ac-cess to benefits. The CongressionalBudget Office (CBO) estimates that15% of those who lose or are deniedaccess to SSI will also lose eligibil-ity for Medicaid. In Fiscal Year 1995,the children's SSI program servedmore than 950,000 qualifying low-income children with severe dis-abilities. Children with mental re-tardation were the largest singlegroup, representing about 42% of allchildren enrolled, while another33% have physical disabilities and25% have mental disorders.

Children will have to qualify onthe basis of a more narrow defini-tion of childhood disability. The billwill repeal the current statutory lan-guage on "comparable severity"thebasis of the United States SupremeCourt's 1990 Zebley decision, requir-ing the Social Security Administration(SSA) to use an evaluation process forchildren comparable to the one it usesfor adults claiming disability benefits.The Supreme Court directed SSA to

F CHILDREN'S SSI PROGR

IN WELFARE REFORM

Or.

/10

lipplement its listing of medical im-pairments with an individualized as-sessment of how a child's impairmentsaffects his or her ability to function.The welfare reform legislation estab-lishes a new definition requiring thata child have a "medically determin-able physical or mental impairmentwhich results in marked and severefunctional limitations" of substantialduration. The new definition maylimit eligibility for children with verysignificant physical or mental func-tional limitations. It is possible, forexample, that children who have acombination of impairments will havemore difficulty qualifying if no singlecondition matches a medical impair-ment on SSA's listing.

Children will no longer be able

AM CHANGES

to qualify through an IndividualizedFunctional Assessment (IFA). Thewelfare reform legislation eliminatesthe Individualized Functional Assess-ment (IFA) established after theZebley decision, as of the date of en-actment. In an IFA, a state disabilityexaminer determines eligibility bycomparing a child's limitations invarious areas of daily activity to theactivities of children the same agewho do not have a disability. In manystates, up to one-third of eligible chil-dren qualified through the IFA.

Children can now qualify onlythrough the more restrictive medicallistings. SSA will re-evaluate eachchild who qualified through an WAto determine if he or she will remain

-eligible through the medical listings.SSA has one year from the date of

enactment to accomplish these rede-terminations. The legislation allocatesadditional administrative funding forSSA to complete them and conductcontinuing-disability reviews. Cur-rent recipients will continue receiv-ing benefits until either July 1, 1997or the date of redetermination, if it islater.

Elimination of the IFA has majorconsequences for children with seri-ous mental, emotional and behavioraldisorders. Among children who nowqualify through the functional assess-ment, 44% have a mental illness orserious emotional disorder. SSA dataindicate the percentage of children,

01111W it MU 36

FOCItINTwithin diagnoses, who will lose ac-cess to SSI by elimination of the IFAincludes: (a) 49% of the children whoqualify because of mood disorders;and (b) 22% of those children whohave schizophrenia.

The IFA generated much of thecontroversy about the program be-Cause critics alleged that parentscoach their children to fake mentaldisorders. These allegations promptedseveral examinations of the programby SSA, the Health and Human Ser-vices Office of Inspector General andthe General Accounting Office. Whilethey criticized some aspects of theprogram, none of the investigatorswere able to substantiate allegationsof widespread fraud. CBO estimatesthat 267,000 children will lose accessto benefits over the next six years asa result of the IF/Vs elimination.

The medical listings will be modi-fied to eliMinate references to ."mal-adaptive behavior"- when evaluatingpersonal/behavioral functioning forchildren with mental impairments.Under the mental impairment list-ings, maladaptive behavior may becounted both in the domain of socialfunctioning and in the domain of per-sonal/behavioral functioning. Con-trary to anecdotal reports, the currentdisability evaluation process has notallowed children to qualify solely onthe basis of a mental diagnosis andevidence of maladaptive behavior.However, despite advocacy-on thisissue, the legislation eliminates use ofsuch evidence in one part of the men-tal impairment listings. CBO esti-mates that, over the .next six years,another 48,000 children will lose ac-cess to benefits as a result of this changein the mental impairment listings.

Up to 50,000 children will loseaccess to health care through theMedicaid program. Children who losetheir SSI benefits will continue to re-ceive Medicaid if they can remain eli-gible on other grounds, such as theirage and their family's low income.Coverage of low-income childrenthough age 13 is now guaranteed andmandatory coverage of older childrenis being phased in through 2002.Children with severe disabilities who

lose their Medicaid eligibility will facetremendous uncertainty. Many fami-lies will simply not have the resourcesto care for them at home. Many willhave to turn to state and local gov-ernments for assistance. Especiallytragic is the likelihood that morefamilies will be forced to surrendercustody to get care for their children, .either through the foster care systemor in state institutionsat far highercost to taxpayers. And without thefederal dollars that parents now spendon their children's behalf, states' coststo serve children with severe disabili-ties will escalate.

More frequent reviews of disabil-ity. The legislation mandates continu-ing-disability reviews every threeyears for all children except thosewhose conditions are not expected toimprove. The child's representativepayee will have to show evidence, atthe time of the review, that the childis receiving treatment to the extentmedically necessary and available forthe qualifying condition. For childrenwho qualify because of their lOw birthweight, it requires reviews 12 monthsafter birth. And within one year-aftera child's 18th birthday,-it requires re-view under adult. eligibility criteria.

Dedicated savings account. Thelegislation requires the parent to es-tablish an account for any back ben-efits that exceed six times the maxi-mum monthly payment. This moneymay be used only to cover specificexpenses, including education or job-.skills training, personal-needs assis-tance, special equipment or housingmodifications, medical treatment,therapy or rehabilitation, and otheritems or services that SSA has deter-mined are appropriate.

Reduced benefits for hospitalizedchildren with private insurance. Thelegislatibn requires that childrenwho are hospitalized, whose medi-cal care is covered by private insur-ance, receive no more than the $30monthly SSI benefit paid to childrenwhose medical bills are covered byMedicaid.

New regulations. The legislationrequires SSA to develop new regula-tions for the children's SSI program

within three months after enactment.Annual reports. The legislation

requires SSA to provide an annual re-port on the SSI program to the Presi-dent and Congress, including histori-cal data on prior enrollment by publicassistance recipients.

GAO study. The legislation re-quires a study by the General Ac-counting Office on the impact of thenew children's SSI provisions and theextra expenses incurred by families ofchildren receiving benefits that arenot covered by other federal; state-orlocal programs:

Current status. The children's SSIprogram now provides, eligible chil-dren up to $470 a month and,.in moststates, access to health care throughMedicaid. The money helps* manyfamilies meet their child's need forspecial food, clothing,, equipment,transportation, unreimbinsed medi-cal expenses and child careinclud:ing care by a parent who cuts backon work to provide it.

At various times during . the wel-fare reform.debate, families faCedthethreat of losing this cash assistance--L'either through its replacement by.vouchers for state-provided servicesor by a 25% reduction in -benefits fOrcertain children. Fortunately, the chil-dren who remain eligible will continue to receive the critical supportof cash assistance.

Recently, the allowance rate forchildren applying for SSI benefits hasdeclined to a rate lower than it wasbefore the Zebley decision. Data fromthe Social Security Administrationshow that the allowance rate, whichwas 43% prior to the Zebley decision,had fallen to 32% in 1995 and con-tinued its drop during the first fourmonths of 1996, to 31%.

SOURCE: Bazelon Center for MentalHealth Law, 1101 15th Street N.W,Suite 1212, Washington, D.C. 20005-1212; (202) 467-5730 (voice); (202)467-4232 (TDD); (202) 223-0409(fax)-

0FALL 1996 37

NOTES & COMMENTS

NATIONAL COMMITTEE FOR QUALITYASSURANCE LAUNCHES BEHAVIORAL HEALTH

ACCREDITATION PROGRAMThe National Committee for Quality Assurance (NCQA)is an independent not-for-profit organization dedicatedto assessing and reporting on the quality of managed careplans, including health maintenance organizations(HMOs). NCQA is governed by a board of directors thatincludes employers, consumer and labor representatives,health plans, quality experts, regulators and representa-tives from organized medicine. NCQA recently launcheda Behavioral Health Accreditation Program that aims toassess the quality of managed behavioral health care ser-vice delivery.

Upon implementation, the standards will be used pri-marily to review managed behavioral health care organi-zations. Managed care organizations that provide behav-ioral health services will continue to be reviewed underNCQNs MCO Accreditation Standards, but will also begiven the option of having their behavioral health pro-grams reviewed under the Behavioral Health Standards.After three years, NCQA anticipates that all managed be-havioral health programs will be assessed against the Be-havioral Health Standards.

The draft standards mark the first national effort toassess the quality of managed behavioral health plans,but the standards also incorporate the work of severallarge, national employers who have, individually, de-veloped criteria by which to examine the quality ofmanaged behavioral health care organizations. For ad-ditional information concerning the draft national ac-creditation standards for managed behavioral health or-ganizations contact: National Committee for QualityAssurance, 2000 L Street, N.W., Suite 500, Washing-ton, D.C. 20036; (202) 955-3500 (voice); (202) 955-3599 (fax); http://www.ncqa.org (World Wide Web).

FAREWELL STAFF MEMBERS!We would like to recognize five Research and TrainingCenter staff members who have recently left the Center.After twelve years with the Research and Training Center,James Mason, the Center's director of training and prin-cipal investigator for the Increasing Multicultural ParentInvolvement project, has accepted a position with theOregon Health Sciences University. James is coordinatingthe Oregon Health Professions Partnership Initiative. Thisnew initiative is an innovative plan to improve educationalopportunities for people of color and women interestedin the health professions. James' new role involves pro-moting close cooperation between high school studentsparticipating in a health science/biotechnology magnetprogram and higher education health-related programs.Fortunately for the Center, James will continue to be avail-able to us as a consultant on diversity issues and will con-tinue to teach a course within Portland State University'sSchool of Social Work.

Denise Stuntzner-Gibson and her family recentlymoved to Roseburg, Oregon. Denise served as the projectmanager for the Effects of Family Participation in Services:A Panel Study project. That project evaluated a five yearintervention funded by the Robert Wood Johnson Foun-dation that included case management services plus flex-ible funding to serve children with serious emotional dis-orders. Denise has happily returned to her small town,rural roots. Denise accepted a position with a social ser-vice organization that provides short-term, intensive ser-vices to families who have been identified as "at-risk"within the child welfare system.

Katie Schultze recently retired after twelve years withthe Research and Training Center and 23 years with theRegional Research Institute for Human Services. Most re-cently Katie served as the project manager for the FamilyParticipation in Residential Treatment Programs project.Her other hats have included coordination responsibili-ties for a number of the Center's conferences and a varietyof administrative duties. Katie's so-called "retirement"includes ongoing social services consulting work andextensive travel plans. Shortly before retiring Katie trav-eled to Ethiopia and Mexico, and now has plans to visitPortugal.

Harold Briggs and Solla Carrock have also just leftthe Research and Training Center. Harold and Solla servedas, respectively, the principal investigator and the projectmanager for the National Evaluation of Statewide FamilySupport Networks project. That evaluation project trackedthe development of 28 statewide family support networks"across the country. We will continue to regularly seeHarold as he is continuing his work as an associate pro-fessor in the Graduate School of Social Work. Harold isthoroughly enjoying teaching: "I just love teaching!" Heis spending more time with his wife and son and is work-ing to increase the balance in his life between work andfamily.

Solla accepted a position as a tester with a softwarecompany. She is continuing her coursework and will re-ceive her computer science degree in December. Solla alsomeets weekly with a writer's group and is diligently pur-suing her interest in creative writing. Solla said, "What Ienjoyed the most about my position with the Researchand Training Center was the opportunity to talk with fam-ily members."

We wish all of these individuals the best in the fu-ture and are grateful that we had the opportunity towork with them.

CENTER FOR MENTAL HEALTH SERVICESFUNDS STUDY OF

RURAL MANAGED CARE SERVICESOn October 1, 1996 the Center for Mental Health Ser-vices, Substance Abuse and Mental Health. Services Ad-ministration, awarded nearly $1,350,000 to Portland StateUniversity's Regional Research Institute for Human Ser-

0VOLUME 10, NO.2

38

NOTES & COMMENTS

vices to conduct a three year study that will examine ru-ral managed care health services. At present, very littleinformation is available about the impact of managed careon children with serious emotional disorders and Medic-aid clients served by rural community mental health agen-cies. The capitated managed care plan to be studied isadministered by Greater Oregon Behavioral Health, Inc.This system operates in rural Oregon, serves some 35,000covered individuals_ and has been in operation as a pre-paid Medicaid provider for almost two years.

The study is designed to: (1) determine whether out-come differences exist between recipients of prepaid ver-sus fee for service health care; (2). compare the linkageswith primary care providers made by prepaid mental healthproviders with those made by fee-for-service mental healthproviders; (3) compare prepaid and fee-for-service clients'usage of hospital and residential services; and (6) com-pare expenditures of prepaid mental health providers andfee-for-service systems providers. For further informationon this project contact: Robert I. Paulson, Ph.D., RegionalResearch Institute for Human Services, Portland StateUniversity, P.O. Box 751; Portland, Oregon 97207-0751;(503) 725-5195 (voice); (503) 7254180 (fax): or E-mailpaulsor@pdx.edu.

NEW CHILDREN'S MENTAL HEALTHRESOURCES

Children's Mental Health: Creating Systems of Care in aChanging Society (1996) is the newly published anchor ofa book series entitled Systems of Care for Children's MentalHealth. Edited by Beth A. Stroul, M.Ed., and including aforeword by Rosalynn Carter, Children's Mental Health thor-oughly discusses current philosophies, trends and prac-tices in children's mental health. This volume examines:(1) the philosophical underpinnings of the system of careconcept and the values and principles that should guideservice delivery; (2) system development efforts under-taken at federal, state and local levels; (3) managementissues affecting the development, operation and evalua-tion of systems of care; (4) family involvement in all as-pects of service planning and delivery within systems ofcare; (5) specific service delivery approaches for varioussubpopulations of youth; and (6) the issues and challengesfacing systems of care in the future.

What Works in Children's Mental Health Services? Un-covering Answers to Critical Questions (1996) is the thirdvolume in the Systems of Care for Children's Mental Healthbook series. Edited by Krista Kutash, Ph.D. and VestenaRobbins Rivera, M.A., this book offers policymakers, ser-vice providers and related professionals a comprehensiveoverview of recent research in the field of children's men-tal health. This volume describes studies that have beenconducted on each of the following components of a co-ordinated network of services: (1) outpatient services; (2)home-based services; (3) crisis and emergency services;(4) case management/service coordination; (5) day treat-

ment; (6) therapeutic foster care; (7) residential services;and (8) family support services. This concise book alsoevaluates the methodology of the studies, analyzes theirresults, and summarizes the findings for each individualcomponent.

The above two books as well as the first volume in theseries, From Case Management to Service Coordination forChildren With Emotional, Behavioral or Mental Disorders:Building on Family Strengths, are available from the-PaulH. Brookes Publishing Company, P.O. Box 10624, Balti-more, Maryland 21285-0624; (800) 638-3775. (voice);(410) 337-8539 (fax).

Emerging School-Based Approaches for Children WithEmotional and Behavioral Problems: Research and Practicein Service- Integration (1996) features conceptual', practiceand research issues relevant to school-based integratedservice programs for, children and youth with emotionaland. behavioral disorders. The topics addressed include:(1) an' analysis of the National Agenda for Children andYouth With Emotional and Behavioral Disorders; (2) struc-turing schools to become primary delivery sites fora rangeof health and social services; (3) descriptions of 'exem-plary programs from across the country that have as theirfocus the integration of services; and (4) the challengesand opportunities of involving families in change processesin schools. Emerging School-Based Approaches may be or-dered from: The Haworth Press, Inc., 10 Alice -Street,Binghamton, New York 13904-1580; (800) 342-9678(voice); (800) 895-0582 (fax).

CALL FOR PAPERSThe Research and Training Center for Children's MentalHealth is now accepting applications to present at theirtenth anniversary conference on service system research.The national conference, A System of Care for Children'sMental Health: Expanding the Research Base, will be held.on February 23-26, 1997 at the Hyatt Regency Westshorein Tampa, Florida.

For the past decade, this national conference has ex-plored current research methods and findings regardingemerging systems of care and policy for children emo-tional and behavioral disorders and their families.. Forthe tenth annual conference, 600 researchers, evaluators,administrators, policymakers, advocates and family mem-bers will come to Tampa Bay. to learn how the researchbase. can be used to strengthen service systems in theircommunities.

The Center will consider proposals for paper presen-tations (30 minutes) and poster presentations, and .en-courages proposals for symposia (90 minutes) that com-bine several presentations related to a single study or topicarea. The deadline to submit applications to present isOctober 30, 1996.

Typical topics will include: (1) characteristics of chil-dren receiving services; (2) service system developmentand assessment; (3) treatment and program evaluations;

0Mil 1996 39

NOTES & COMMENTS

(4) organization, staffing and financing of service systems;(5) policy development/change initiatives; (6) account-ability and managed care; (7) research and evaluation ofservices; (8) research in the education system; and (9)studies on child welfare/foster care systems.

The Research and Training Center for Children's Men-tal Health is part of the Department of Child and FamilyStudies at the University of South Florida's Mental HealthInstitute. The Center is federally funded by the Centerfor Mental Health Services and the National Institute onDisability and Rehabilitation Research.

To request submission information and instructionscontact: Krista Kutash, Ph.D., Deputy Director, Researchand Training Center for Children's Mental Health, FloridaMental Health Institute, University of South Florida,13301 Bruce B. Downs Blvd., Tampa, Florida 33612-3899;(813) 974-4661 (voice); (813) 974-6257 (fax); orkutash@hal.fmhi.usf.edu (e-mail).

BI-ANNUAL TRAINING INSTITUTESHELD IN MICHIGAN

The Grand Traverse Resort in Traverse City, Michigan wasthe site for the recent children's mental health TrainingInstitutes. The bi-annual event, held June 9-13, 1996, andentitled Developing Local Systems of Care in a ManagedCare Environment for Children and Adolescents with Seri-ous Emotional Disturbances, attracted approximately 1300participants from across the United States. General ses-sions examined, from a variety of perspectives, the growthof managed care and its potential implications for sys-tems of care, issues facing children and families and cur-rent directions in our national policy.

Featured speakers included Keith Schafer, vice presi-dent of Government Programs of Value Behavioral Health,a managed behavioral health company serving over 21million people (where his role is assisting governmentagencies as they move into the managed care environ-ment) and Geoffrey Canada, president and chief execu-tive officer of New York City's Rheedlan Centers for Chil-dren and Families and author of Fist Stich Knife Gun: APersonal History of Violence in America.

In addition, workshops focused on a range of issuesrelated to system development such as educating the pub-lic about children's mental health, roles for families insystems of care, accountability in systems of care, leader-ship, family involvement in managed care, and involvingyouth in systems of care.

The Institutes are sponsored by the National Techni-cal Assistance Center for Children's Mental Health atGeorgetown University and are funded by the Center forMental Health Services, Substance Abuse and MentalHealth Services Administration. For more informationcontact the National Technical Assistance Center forChildren's Mental Health at 3307 M Street, N.W., Wash-ington, D.C. 20007; (202) 687-5000 (voice); (202) 687-1954 (fax).

FEDERATION OF FAMILIES FORCHILDREN'S MENTAL HEALTH SCHEDULES

EIGHTH ANNUAL CONFERENCEThe Federation of Families for Children's Mental Healthwill hold its eighth annual conference November 15-17,1996 at the Crystal Gateway Marriott Hotel in Arlington,Virginia. The conference, entitled Ahead of the Curve:Maximizing Learning Opportunities for Children and YouthWith Emotional, Behavioral or Mental Disorders, will fea-ture a keynote address by Jonathan Kozol, author of Amaz-ing Grace. Kozol is a long-time child welfare advocate.His newest book, Amazing Grace, is a report from one ofthe poorest places in the nation, New York's South Bronx.A limited number of scholarships are available to make itpossible for families from all ethnic and cultural back-grounds, all economic circumstances, and all geographicregions of the country to participate in the Federation'sannual conference. For additional conference informationcontact: Federation of Families for Children's MentalHealth, 1021 Prince Street, Alexandria, Virginia 22314;(703) 684-7710 (voice); (703) 836-1040 (fax); http://www.mindspring.com/-bcfarnily/ (World Wide Web).

NEW MENTAL HEALTH INFORMATIONCLEARINGHOUSE ANNOUNCED

The Substance Abuse and Mental Health ServicesAdministration's (SAMHSA) Center for Mental HealthServices (CMHS) recently launched the National MentalHealth Services Knowledge Exchange Network (KEN)a one-stop source of information and resources on men-tal health. KEN offers a traditional helpline for informa-tion and referrals through a toll-free telephone service((800) 789-2647). The public can also reach KEN online,either through its World Wide Web site on the Internet(http: / /wwwmentalhealth.org) or through its electronicbulletin board service ((800) 790-2647), which is acces-sible via computer and modem.

KEN was created to provide ready, access to mentalhealth information and resources to users of mental healthservices, their families, the general public, and those whodesign, deliver or finance mental health services. "Men-tal illness is one of the most significant health problemsin America," said SAMHSA Administrator Nelba Chavez,Ph.D. "At the same time, it is one of the most treatableillnesses. Unfortunately, many people are not getting thehelp they needoften because they do not know whereto go for help. KEN is a way to put people in touch withthe information and referrals they need."

KEN's toll-free helpline and online resources pro-vide linkages and referrals to more than 1,600 con-sumer and family advocacy organizations; federal, stateand local mental health agencies; mental health orga-nizations and associations; national clearinghouses andinformation centers; and sixteen-CMHS technical as-sistance centers that address special issues related tomental health services.

40VOLUME 10, 00.2

'PUBLICATIONS

AN INTRODUCTION TO CULTURAL COMPETENCE PRINCIPLES AND ELEMENTS: AN

ANNOTATED BIBLIOGRAPHY. Describes articles & books that exemplify aspectsof the CASSP cultural competence model. $6.50

ANNOTATED BIBLIOGRAPHY. COLLABORATION BETWEEN PROFESSIONALS & FAMI;

LIES OF CHILDREN WITH SERIOUS EMOTIONAL DISORDERS. $6.00.

ANNOTATED BIBLIOGRAPHY. PARENTS OF EMOTIONALLY HANDICAPPED CHIL-

DREN: NEEDS. RESOURCES, & RELATIONSHIPS WITH PROFESSIONALS. $7.50.

ANNOTATED BIBLIOGRAPHY. YOUTH IN TRANSITION: RESOURCES FOR PROGRAM

DEVELOPMENT & DIRECT SERVICE INTERVENTION. $1.00.

BROTHERS & SISTERS OF CHILDREN WITH DISABILITIES: AN ANNOTATED BIBLIOG-

RAPHY. $5.00.

BUILDING A CONCEPTUAL MODEL OF FAMILY RESPONSE TO A CHILD'S CHRONIC

ILLNESS OR DISABILITY. Proposes comprehensive model of family caregivingbased on literature review. Causal antecedents, mediating processes andadaptational outcomes of family coping considered. $5.50.

CHANGING ROLES, CHANGING RELATIONSHIPS: PARENT-PROFESSIONAL COL-

LABORATION ON BEHALF OF CHILDREN WITH EMOTIONAL DISABILITIES. Examinesbarriers to collaboration, elements of successful collaboration, strate-gies for parents and professionals. $4.50.

CHILD ADVOCACY ANNOTATED BIBLIOGRAPHY. $1.00.

CHOICES FOR TREATMENT: METHODS, MODELS. & PROGRAMS OF INTERVENTION

FOR CHILDREN WITH EMOTIONAL DISABILITIES & THEIR FAMILIES. AN ANNOTATED

BIBLIOGRAPHY. Includes innovative strategies and programs. $6.50.

COLLABORATION IN INTERPROFESSIONAL PRACTICE AND TRAINING: AN ANNO-

TATED BIBLIOGRAPHY. Addresses interprofessional, interagency and family- .professional collaboration.' Includes methods of interprofessional col-laboration, training for collaboration, and interprofessional program andtraining examples. $7.00.

CULTURAL COMPETENCE. SELF- ASSESSMENT QUESTIONNAIRE: A MANUAL FOR

USERS. Instrument to assist chile-& family-serving agencies assess cross-cultural strengths & weaknesses. $8.00

DEVELOPING AND MAINTAINING MUTUAL AID GROUPS FOR PARENTS & OTHER

FAMILY MEMBERS: AN ANNOTATED BIBLIOGRAPHY. $7.50.

FAMILIES AS ALLIES CONFERENCE PROCEEDINGS: PARENT-PROFESSIONAL COL-

LABORATION TOWARD IMPROVING SERVICES FOR SERIOUSLY EMOTIONALLY HANDI-

CAPPED CHILDREN & THEIR FAMILIES:1986. Delegates from thirteen westernstates. $1.00.

FAMILY ADVOCACY ORGANIZATIONS: ADVANCES IN SUPPORT AND SYSTEM RE-

FORM. Describes and evaluates the development of statewide parentorganizations in 15 states. $8.50. .

FAMILY CAREGIVING FOR CHILDREN WITH A SERIOUS EMOTIONAL DISABILITY.

Summarizes a family caregiving model employed in survey of familieswith children with emotional disabilities. Includes review, questionnaire,data collection and analysis procedures and findings. $8.00.

FAMILY INVOLVEMENT IN POLICY MAKING: A FINAL REPORT ON THE FAMILIES IN

ACTION PROJECT. Outcomes of focus group life history interviews; five casestudies of involvement in policy-making pmcessess; results of survey data;implications for family members and policy-makers. $10.25.

FAMILY/PROFESSIONAL COLLABORATION:THE PERSPECTIVE OF THOSE WHO HAVE

TRIED. Describes curriculum's strengths and limitations, effect of trainingon practice, barriers to collaboration. $7.50

FAMILY RESEARCH & DEMONSTRATION SYMPOSIUM REPORT. Summarizesrecommendations from 1992 meeting for developing family research anddemonstration agenda in areas of parent-professional collaboration,training systems, family support, advocacy, multicultural competence,and financing. $7.00.

FAMILY SUPPORT AND DISABILITIES: AN ANNOTATED BIBLIOGRAPHY. Familymember relationships with support persons, service system for families,descriptions of specific family support programs. $6.50.

GATHERING & SHARING: AN EXPLORATORY STUDY OF SERVICE' DELIVERY TO

EMOTIONALLY HANDICAPPED INDIAN CHILDREN. IS Loch

GLOSSARY OF ACRONYMS, LAWS, & TERMS FOR PARENTS WHOSE CHILDREN HAVE

EMOTIONAL HANDICAPS. Glossary excerpted from Taking Charge. Approxi-mately 150 acronyms, laws, words, phrases explained. $3.00.

INTERAGENCY COLLABORATION: AN ANNOTATED BIBLIOGRAPHY FOR PROGRAMS

SERVING CHILDREN WITH EMOTIONAL DISABILITIES & THEIR FAMILIES. $5.50.

INTERPROFESSIONAL EDUCATION FOR FAMILY-CENTERED SERVICES:A SURVEY OF

INTERPROFESSIONAUINTERDISCIPLINARY TRAINING PROGRAMS. Planning, imple-mentation, content, administration, evaluation of family:centered train-ing programs for professionals. $9.00.

ISSUES IN CULTURALLY COMPETENT SERVICE DELIVERY:AN ANNOTATED BIBLIOG-

RAPHY. $5.00.

a MAKING THE SYSTEM WORK: AN ADVOCACY WORKSHOP FOR PARENTS. A

trainers' guide for a one-day worhshop . to introduce the purpose ofadvocacy, identify sources of power; the chain of command in agencies andschool systems, practice advocacy techniques. $8.50.

THE MUIJNOMAH COUNTY CAPS PROJECT: AN EFFORT TO COORDINATE SERVICE

DELIVERY FOR CHILDREN AND YOUTH CONSIDERED SERIOUSLY EMOTIONALLY DIS-

TURBED. Process evaluation of an interagency collaborative effort. $7.00.

NATIONAL DIRECTORY OF ORGANIZATIONS SERVING PARENTS OF CHILDREN AND

YOUTH WITH EMOTIONAL AND BEHAVIORAL DISORDERS. THIRD EDITION. Includes612 entries describing organizations that offer support, education, refer-ral, advocacy, and other assistance to parents. $12.00.

Cl NEXT STEPS:A NATIONAL FAMILY AGENDA FOR CHILDREN WHO HAVE EMOTIONAL

DISORDERS CONFERENCE PROCEEDINGS. 1988. Development of parent organiza-tions, building coalitions, family support services, access to educationalservices, custody relinquishment, case management. $6.00.

.

NEXT STEPS: A NATIONAL FAMILY AGENDA FOR CHILDREN WHO HAVE EMOTIONAL

DISORDERS (BOOKLET). Designed for use in educating about children's mentalhealth issues. Single copy: $2.50. Five Copies:$7.00.

ORGANIZATIONS FOR PARENTS OF CHILDREN WHO HAVE SERIOUS EMOTIONAL

DISORDERS: REPORT OF A NATIONAL STUDY. Study of 207 organizations forparents of children with serious emotional disorders. $4.00.

PARENT-PROFESSIONAL COLLABORATION CONTENT IN PROFESSIONAL EDUCA-

TION PROGRAMS:A RESEARCH REPORT. Results of nationwide survey of profes-sional programs that involve parent-professional collaboration. Includesdescriptions of individual programs. $5.00.

.PARENTS AS POLICY-MAKERS: A HANDBOOK FOR EFFECTIVE PARTICIPATION.

Describes polity making bodies, examines advocacy skills, describes recruit-ment methods, provides contacts for further information.$7.25.

RESPITE CARE: A KEY INGREDIENT OF FAMILY SUPPORT. CONFERENCE PROCEED-

INGS.1989. Starting respite programs, financing services $5.50.

RESPITE CARE: AN ANNOTATED BIBLIOGRAPHY. $7.00.

RESPITE CARE:A MONOGRAPH. Types of respite care programs, recruitmentand training of providerS, benefits of respite services to families, respite carepolicy and future policy directions, and funding sources. $4.50.

STATEWIDE PARENT ORGANIZATION DEMONSTRATION PROJECT FINAL REPORT.

Evaluates the development of parent organizations in five states. $5.00.

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FAR 1996 4 1

PUBLICATIONS

.7 TAKING CHARGE: A HANDBOOK FOR PARENTS WHOSE CHILDREN HAVE EMO-

TIONAL DISORDERS. Third edition includes CASSP principles, recentchanges in federal law, description of various disorders. 57.50.

7 THE DRIVING FORCE: THE INFLUENCE OF STATEWIDE FAMILY NETWORKS ON

FAMILY SUPPORT & SYSTEMS OF CARE. Highlights 1993 activities of 15

statewide family advocacy organizations. 59.00.

7 THERAPEUTIC CASE ADVOCACY TRAINERS' GUIDE: A FORMAT FOR TRAINING

DIRECT SERVICE STAFF & ADMINISTRATORS. Addresses interagency collabora-

tion among professionals in task groups to establish comprehensivesystems of care for children and their families. S5.75.

THERAPEUTIC CASE ADVOCACY WORKERS' HANDBOOK. Companion to the

Therapeutic Case Advocacy Trainers' Guide. Explains the TherapeuticCase Advocacy model, structure of task groups, group process issues,

evaluations. S4.50.

0 TRANSITION POLICIES AFFECTING SERVICES TO YOUTH WITH SERIOUS EMO-

TIONAL DISABILITIES. Examines how state level transition policies canfacilitate transitions from the child service system to the adult service

system. Elements of a comprehensive transition policy are described.Transition policies Jrom seventeen states are included. 58.50.

WORKING TOGETHER FOR CHILDREN: AN ANNOTATED BIBLIOGRAPHY ABOUT

FAMILY MEMBER PARTICIPATION IN CHILDREN'S MENTAL HEALTH POLICY-MAKING

GROUPS. Ideas for enhancing family member participation and conceptualmodels regarding increasing participation. S6.25.

WORKING TOGETHER: THE PARENT/PROFESSIONAL PARTNERSHIP. Trainers'

guide for a one-day workshop for a combined parent/professional audi-ence. S8.50.

YOUTH IN TRANSITION: A DESCRIPTION OF SELECTED PROGRAMS SERVING ADO-

LESCENTS WITH EMOTIONAL DISABILITIES. Residential treatment, hospital and

school based. case management. and multi-service agency transitionprograms are included. 56.50.

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MEMBERS. Lists journal articles, book chapters, monographs. Free.

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