34p. - ERIC - Education Resources Information Center Portland State Univ., OR. Regional Research...

DOCUMENT RESUME

ED 423 648 EC 306 740

AUTHOR Caplan, Elizabeth, Ed.; Blankenship, Kelly, Ed.; McManus,Marilyn, Ed.

TITLE Family Participation in Policymaking.

INSTITUTION Portland State Univ., OR. Regional Research Inst. for HumanServices.

SPONS AGENCY National Inst. on Disability and Rehabilitation Research(ED/OSERS), Washington, DC.; Substance Abuse and MentalHealth Services Administration (DHHS/PHS), Rockville, MD.Center for Mental Health Services.

PUB DATE 1998-00-00NOTE 34p.

AVAILABLE FROM Publications Coordinator, Research & Training Center,Regional Research Institute for Human Services, PortlandState University, P.O. Box 751, Portland, OR 97207-0751;Tel: 503-725-4175; Fax: 503-725-4180; e-mail:[email protected]

PUB TYPE Collected Works - Serials (022) -- Guides - Non-Classroom

(055)

JOURNAL CIT Focal Point; v12 n1 Fall 1998EDRS PRICE MF01/PCO2 Plus Postage.

DESCRIPTORS Advocacy; Children; *Emotional Disturbances; FamilyInvolvement; *Mental Health Programs; Parent Associations;*Parent Empowerment; Parent Influence; *ParentParticipation; Parent Rights; *Policy Formation; PublicPolicy; *State Programs

ABSTRACTThis bulletin focuses on family participation in mental

health policymaking and highlights state efforts to increase familyinvolvement. Articles include: (1) "Promoting Family Member Involvement inChildren's Mental Health Policy Making Bodies," which describes how differentstates are promoting family member involvement in various statutory and

policy schemes; (2) "Partners in Policymaking: Far More than the Object ofPolicy," which provides quality principles for evaluating programs; (3)

"Social Security Administration Reviews Closed Cases for Children with

Disabilities"; (4) "Family Advocacy Coordinators: Evolving Roles inColorado's System of Care"; (5) "Hawaii Federal Court Consent Decree MandatesConsumer and Family Member Participation in Policymaking"; (6) "Child and

Adolescent Local Area Networks of Care in Illinois"; (7) "Partners at the

Policy Table," which describes efforts in Massachusetts to involve parents in

public policy discussions; (8) "Rhode Island's Efforts To Promote Family

Member Participation in Policymaking"; (9) "Family Member Involvement inPolicymaking in Vermont"; (10) "Family-Professional Relationships: MovingForward Together: A Summary of the National Peer Technical AssistanceNetwork's 1998 Publication"; (11) "1998 Building on Family StrengthsConference Held in Portland"; and (12) "EAT PYE: Youth Participation inPolicymaking". The bulletin closes with a list of publications on family

participation and advocacy. (CR)

Family Participation in Policymaking

U.S. DEPARTMENT OF EDUCATIONOffice of Educational Research and Improvement

EDUCATIONAL RESOURCES INFORMATIONCENTER (ERIC)

CI This document has been reproduced asreceived from the person or organizationoriginating it.

CI Minor changes have been made toimprove reproduction quality.

Points of view or opinions stated in thisdocument do not necessarily representofficial OERI position or policy.

rocAfPoINT

U.S. DEPARTMENT OF EDUCATIONOffice ot Educational Research and improvement

EDUCA NAL RESOURCES INFORMATIONCENTER (ERIC)

his document has been reproduced asreceived from the person or organizationoriginating it.

0 Minor changes have been made to improvereproduction quality

o Points ot view or opinions stated in this docu-ment do not necessarily represent officialOERI position or policy.

NATIO NM° CE FAMILY PPORT @HIL R BRITAL EALTH

FAMILY

PROMOTING FAMILY M

IN CHILDREN'S

POLICYMAK

PARTICIPATION ON POLICY

EMBER INVOLVEMENT

MENTAL HEALTH

ING BODIES

'Much of the family member in-volvement that is happening at

the state and local level is due, at leastin part, to the efforts by the federalgovernment to institutionalize familyinvolvement in policymaking. In1985 Child and Adolescent ServiceSystem (CASSP) staff added a familygoal to the program. This goal trans-lated into a requirement that state ap-plications for CASSP funds describehow families would participate in ser-vice planning efforts at the child andfamily, program, and system levels. In1986 Congress passed the State Men-tal Health Services ComprehensivePlan (Public Law 99-660), whichmandated family member participa-tion in the development of state men-tal health plans. Public Law 99-660'smandate continues today through theAlcohol, Drug Abuse and MentalHealth Administration Reorganiza-tion Act (Public Law 102-321).

Family involvement is also a keycomponent of federally-funded earlyintervention services to infants andyoung children who have disabilitiesor are at-risk of developmental dis-abilities (Public Law 99-457; PublicLaw 105-17). Further, with respect tospecial education, direct involvementof family members is required in thedevelopment of individualized edu-cation plans (IEP's) for their children(Public Law 94-142; Public Law 101-476; Public Law 105-17). Theprogress made-pursuant to federalmandates-to ensure consumer andfamily member participation inchildren's policymaking continues to

vary widely across states and amongareas within states. This issue of Fo-cal Point examines family memberand consumer participation inchildren's mental health policymakingat state, regional and local levels.Here, too, we report upon the workof the Research and Training Center'sFamily-Centered Policy: A Study ofFamily Member Representation at thePolicy Level project.

The findings presented by theFamily-Centered Policy project arebased on research done over the pastfour years. Data were collected via atelephone interview conducted withat least one representative from eachstate's department of child and ado-lescent mental health and a represen-tative from each state's statewide fam-ily advocacy organization. Theprotocol for this interview was open-ended in nature and focused prima-rily on identifying any written poli-cies, administrative rules or bylawsthat existed in that state that man-dated family member participation inpolicymaking. Copies of the policydocument were then obtained andreviewed with regard to the language

Continued on page 3

MAKING

PARTNERS IN

POLICYMAKING:

FAR MORE THAN THE

OBJECT OF POLICY

"or those of us who remember it,diagramming sentences for gram-

mar class was a laborious task. Mosttimes it went like this: pick out thesubject, pick out the verb, see if thereis an object. Basically you tried toanswer the question "Who did whatto whom?" Sometimes, analyzingpublic policy can be the same way.People with disabilities and theirfamilies all too often are the objectsof policies instead of helping to setthe rules (either legislated or agency-set) that govern their lives. In 1987,an idea was developed in Minnesotato rearrange the parts of the policysentence. "Partners in Policymaking"was designed to provide leadershiptraining to parents of young childrenwith disabilities and adults with dis-abilities. The program has been rep-licated in over forty of the UnitedStates and in the United Kingdom.The lessons and values of the programhave applications across social policyareas and across oceans.

WHAT IS PARTNERSIN POLICYMAKING?

Partners in Policymaking is a lead-ership training program that teacheswhat works in disability services andsupports to the people who have themost experience with what is neededin systems change individuals.withdisabilities and parents of young chil-dren with disabilities. This hard-wonexpertise, combined with the policy

Continued on page 6

t 0,5

MU 1198 a l

FOt tOINT

RESEARCH AND TRAINING CENTER

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

NATIONAL CLEARINGHOUSE:

(800) 628-1696

Copyright 1998 by Regional ResearchInstitute for Human Services. All rightsreserved. Permission to reproducearticles may be obtained by contactingthe editor.

The Research and Training Center wasestablished in 1984 with funding from theNational Institute on Disability andRehabilitation Research, U. S. Departmentof Education, in collaboration with theCenter for Mental Health Services,Substance Abuse and Mental HealthServices Administration, U. S. Departmentof Health and Human Services. The contentof this publication does not necessarilyreflect the views or policies of the fundingagencies.

We invite our audience to submitletters and comments.

RESEARCH AND TRAINING CENTERBarbara J. Friesen, Ph.D., Center [email protected] M. Koroloff, Ph.D., Director of [email protected] J. Exo, M.S.W, Center [email protected] E. Jessen, Administrative [email protected] Almquist, B.A.,Administrative [email protected]

Effects of Family Participation inServices: A Panel StudyBarbara). Friesen, Ph.D., PrincipalInvestigatorLyn 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 ofFamily Member Representation at thePolicy LevelNancy M. Koroloff, Ph.D.,Principle Investigator

Increasing MulticulturalParent Involvement

Longley, Ed.D,Co-Principal InvestigatorJanet Walker, Ph.D.,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 ResearcherMyrth Ogilvie, M.S.W., Project Manager

Family Participation in ResidentialTreatment ProgramsBarbara). Friesen, Ph.D.,Co-Principal InvestigatorJean M. Kruzich, Ph.D.,Co-Principal InvestigatorMyrth Ogilvie, M.S.W., Project Manager

Families and Therapeutic Foster Parentsas PartnersPauline Jivanjee, Ph.D., Principal Investigator

Family Participation in ProfessionEducation: An InterventionBarbara Friesen, Ph.D.,Co-Principal InvestigatorM.J. Longley, Ed.D.,Co-Principal Investigator

Development of a Teacher EducationCurriculum Promoting FamilyPartnerships for Inclusive ClassroomsMJ. Longley, Ed.D.,Co-Principal InvestigatorNancy Benson, Ph.D.,Co-Principal Investigator

Promising Practices for Family ProviderCollaborationNancy Koroloff, Ph.D.,Principal InvestigatorJennifer Simpson, Ph.D., Project Manager

Resource Service and NationalClearinghouse on Family Support andChildren's Mental HealthElizabeth Caplan, M.P.A.,Family Resource CoordinatorDenise Schmit, Publications Coordinator

Center AssociatesRazif Abdrazak, Kelly Blankenship, LiseFreeman, Phoebe Hsu, Rashad Khan, PaulKoren, Jodi Krebs, E. Darey Shell, BryanWoolcock

FOCAL POINTElizabeth Caplan, M.P.A., [email protected] Blankenship, M.S.W., EditorMarilyn McManus, J.D., M.S.W., EditorCirculation: 29,000

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

REGIONAL RESEARCH INSTITUTE

FOR HUMAN SERVICESNancy M. Koroloff, Ph.D., Director

NATIONAL ADVISORY COMMITTEE0 Richard Angell, M.D., Director ofTraining of Child Psychiatry, Departmentof Psychiatry, Oregon Health SciencesUniversity

° William Arroyo, M.D., AssistantDirector, Child/Adolescent Psychiatry,Los Angeles CountyUSC MedicalCenter

° Marva Benjamin, Director, MinorityInitiative, National Technical AssisstaceCenter for Children's Mental HealthPolicy, Georgetown University,Washington, D.C.

° Ira A. Burnim, J.D., Legal Director,Bazelon Center for Mental Health Law,Washington, D.C.

° Cleopatra Caldwell, Ph.D., African-American Mental Health ResearchCenter, Univeristy of Michigan, AnnArbor, Michigan

° Beth Dague, M.A., Consultant, Canton,Ohio

° Karl Dennis, Executive Director,Kaleidoscope, Inc., Chicago, Illinois

° Glenda Fine, Director, Mental HealthAssociation of S.E. Pennsylvania,Philadelphia, Pennsylvania

0 Paula Goldberg, Director, ParentAdvocacy Coalition for EducationalRights, Minneapolis, Minnesota

° Jody Lubrecht, Consultant, Tacoma,Washington

° Brenda Lyles, Ph.D., Department ofHuman Services, Coral Springs, Florida

° Larry Platt, M.D., Public HealthConsultant, Berkeley, California

° Phyllis Magrab, Director, GeorgetownUniversity Hospital Child DevelopmentCenter, Washington, D.C.

0 Betsy J. Poore, Richmond, Virginia

° Deify Perla Roach, Parents for Behavior-ally Different Children, Albuquerque,New Mexico

.;VOlLIME 12, NO.1

FOCAINT

PROMOTING

used. The study's two major goalswere to identify what kind of policyinstruments were being used to man-date family member participation inpolicymaking and to assess the lan-guage used to define which familymembers were considered eligible.

The policy instruments identifiedin the course of this research project(Figure 1) share the common featureof promoting or requiring familymember or consumer participation inchildren's mental health policymak-ing activities. There are, however, dif-ferent motivations expressed for thecreation of these policy instruments.Arguably, written policy guidelinesestablished at the agency or organi-zational level reflect "street-level"buy-in by agency administrators. Thevery administrative personnel whocreated the written policy guidelinesare often the same individuals whowill serve on the board or committeewith family member representatives.The two will likely sit elbow-to-elbowat the policymaking table. Similarly,when an agency launches apolicymaking body and establishesbylaws for the organization, that, too,reflects the agency's commitment.

At the next level, administrativerules reflect the will of state agencylevel personnel. An administrativerule is an official mandate or direc-tive drafted and issued by a govern-mental agency. A state agency's au-thority to issue administrative rulesis granted by statute by the state leg-islature.

Statutes are the mechanism usedto promote family member involve-ment in policymaking that was mostoften identified in the course of thisstudy. At this level, statutes reflect thewill of the state legislature and, typi-cally, they reflect the will of familymembers of children with seriousmental, emotional or behavioral dis-orders who have lobbied the legisla-ture on behalf of their children. Ver-mont is a leading example of a statein which family member participationhas been a cornerstone of children's

FAMILY MEMBER INVOLVEMENT CONTINUED

Lawsuits

Statutes

AdministrativeRules

MAtoPeflfm(fmilgliGgtf.0910Established

Organization!

Organizational

Agency@ad

Bylaws

Figure 1. Policy instruments identified inthis project

mental health decisionmaking fromthe very beginning. That state's Act264, described on page 20, mandatesparent involvement at all levels ofdecisionmaking. As one Vermont re-spondent stated, "It is virtually un-heard of not to include parents inchildren's mental health planning. It'sbecome a way of life."

Lawsuits are, of course, the most"top-down" vehicle for securing fam-ily members a seat at the decision-making table. At this level, typically,children with disabilities are class ac-tion plaintiffs and state agencies andstate agency directors are the nameddefendants. From the perspective ofthe defendants, lawsuits are, withoutdoubt, the most coercive method forsecuring family members a seat at thedecision-making table. As contrastedwith the relative harmony promotedby agency level policy guidelines orbylaws, acrimony may well dividestate planners or policymakers fromfamily advocates who are embroiledin a lawsuit. Conversely, state officialsmay whole heartedly agree with theplaintiffs and quietly support a law-suit as the only vehicle that will suc-cessfully "get the attention" of legis-lative appropriations committees.

Most states reported having legis-lation that required family member orconsumer involvement in governingbodies at state, regional or local lev-els. Thirty-one states reported at least

one piece of such legislation andseven states reported that they hadpassed more than one. Seven statesreported that they had developed ad-ministrative rules that supported fam-ily member involvement and twostates were functioning under require-ments laid down by lawsuits. Elevenstates reported that they had devel-oped a combination of policy instru-ments that supported family memberparticipation, most typically this in-cluded legislation supported by writ-ten policy guidelines or administra-tive rules.

Our analysis of the policy instru-ments identified focused primarilyupon answering the question, "Whoserves?" In addition to various namedofficials-such as the heads of the de-partments of education, child welfare,mental health, juvenile justice, spe-cial education-the present study iden-tified a variety of "categories" of in-dividuals who serve on children'smental health policymaking bodies.There are four levels of family mem-ber involvement set forth in the vari-ous statutory and policy schemes.

Consumers. Four states (by stat-ute in Connecticut, New Mexico,Minnesota and by a policy guidelinein Illinois) have provisions that en-sure that youth (or former youth)consumers of children's mental healthservices will have the opportunity toparticipate in policy developmentdecisionmaking. These statutes areparticularly exciting because they goto the very core of what representa-tion is about. The most fundamentalparticipation in the area of children'smental health requires that youth andyouth consumers have a seat at thepolicymaking table.

Family members. Fifteen statesspecifically identify involving familymembers whose children have mental,emotional or behavioral disorders. Withthe exception of Illinois, statutes arethe vehicles used in each state to pro-mote or require family member in-volvement in children's mental healthpolicymaking. Unlike legal changes

MR 1998 5

FOCAINT

brought abotit by lawsuits, legalchange brought about through legis-lation reflects that there is a growingpublic consensus about the rightnessof a particular course of action. Bytheir very nature, statutes reflect a sig-nificant community "buy-in" to thetopic of the legislation.

Ten states have statutes that spe-cifically identify participation byfamily members of children inpolicymaking. While these statutesinclude children with mental or emo-tional disabilities, their scope is muchbroader. For example, as the appoint-ing authority to the Maine AdvisoryCommittee on Children with SpecialNeeds, the Governor "shall give dueconsideration to including parents orrelatives of children in need of treat-ment." (Maine Revised Statutes Anno-tated 6241) Thus, the individualsserving on Maine's Advisory Commit-tee on Children With Special Needswill likely include family members ofchildren with a broad range of physi-cal disabilities as well as representa-tives of families whose children havemental health disabilities.

Those statutes that encourage orrequire the inclusion of "families ofpersons with mental illness" (ColoradoRevised Statutes 27-10-129) or "fam-ily members of consumers" (VirginiaCode 37.1-195) constitute the broad-est category of family member repre-sentation and are the most vague. Ac-cordingly, family advocates forchildren with mental health disabili-ties may cite such statutes as author-ity that they are entitled to serve onthe particular board or committee.They may argue, for example, that asthe legislature did not specify familymembers of adults only, it was thelegislature's intention to be broadlyinclusive.

Advocacy Organizations. Somestate policies address-not individualfamily member participation-but in-volvement by representatives ap-pointed by advocacy organizations.The language employed ranges fromthe very general ("at least one repre-sentative of an advocacy group forchildren with emotional distur-bances," Minnesota Statutes 245.697)

to the very specific. A Mississippi stat-ute requires, for example, that an ad-ditional representative on the Missis-sippi Children's Advisory Council"shall be a family member designatedby Mississippi Families as Allies, Inc.,which is a nonprofit statewide advo-cacy organization that has a majorfocus on this population" (MississippiCode Annotated 43-14-1).

While the Mississippi statute rec-ognizes the statewide advocacyorganization's well-deserved, very fa-vorable national reputation, it undulylimits access to participation. Whilethe council will hear the namedorganization's perspective, there is noassurance that other organizations-who may have very different agendasthan the named organization-willhave the opportunity to be heard.With respect to participation by rep-resentatives of children's mentalhealth family advocacy organizations,more general language is preferable.

People of Color. Seventeen stateshave written mandates requiringpolicymaking bodies to include rep-resentatives of people of color. Mostof these statutes are similar to that ofthe State of New Mexico. The mem-bership of the New Mexico Children,Youth and Families Advisory Com-mittee must "provide adequate rep-resentation of ethnic groups" (NewMexico Statutes Annotated 9-2a-12).Only five states specify a particularpopulation of color and, in every in-stance, Native Americans are thegroup identified to participate.

Other Criteria. A few states havestatutes that require geographic, eco-nomic and/or proportional genderrepresentation on children's mentalhealth policymaking bodies.

COMPENSATION. Typically, priva teindividuals serving on children's men-tal health policymaking boards orcommittees receive no compensationfor the time they invest in this work.They are, however, often compen-sated for their out-of-pocket expensessuch as food, lodging and travel. Forexample, North Carolina providesthat area board members "may recei&as compensation for their services per,diem and a subsistence allowance foreach day" and "may be reimbursed forall necessary travel expenses and reg-istration fees" (North Carolina Gen-eral Statutes 122C-120). In fact, fam-ily members should be compensatedfor their time. A commitment to payfamily members for their time trulyreflects the goal of working partner-ships with families. Professionals'salaries compensate them for theircommittee work, so, too, should fam-ily members be compensated for theirparticipation. Florida is noteworthyfor its provision authorizing payment"for preapproved child care expensesor lost wages for members who areconsumers of the department's ser-vices" (Florida Statutes 20.19(7)(g)).

TRAINING AND RECRUITMENT.A few states do mandate training fornew board members. North Carolina,for example, provides that all mem-bers of an area authority's board ofdirectors "shall receive initial orien-tation on board members' responsi-bilities and training...in fiscal man-agement, budget development, andfiscal responsibility" (North CarolinaGeneral Statutes 122C-119.1). Re-cruitment is delegated to statewidefamily organizations in many states.In twenty-four states, both family rep-resentatives and state mental healthstaff agreed that the family organiza-tion had been given the responsibil-ity for identifying family memberswho would like to serve as membersof boards and committees. The fam-

VOLUME 12, NO.1

rocAINTily advocacy organization receivesmoney to do this outreach in fourteenstates.

LAWSUITS. Litigation is the remain-ing key vehicle for promoting or re-quiring family member participationin children's mental healthpolicymaking. Lawsuits are extremelyexpensive and should only be pur-sued after all other efforts have failed.Most notably, in 1993 a class actionlawsuit, Felix v. Waihee, was filed inUnited States District Court (Hawaii).As Lavernne Nakamura's article, onpage 11, explains, negotiations amongthe parties led to the entry of a Con-sent Decree and a subsequent Imple-mentation Plan.

Felix v. Waihee represents the mostcomprehensive court-mandated effortto date to require consumer and fam-ily member participation inpolicymaking activities. The lawsuitresulted in the creation of a Commu-nity Children's Council (CCC) foreach of the state's geographic areas aswell as the creation of the State

Children's Council. Felix v. Waiheerequires: (1) At least one-third of themembers of each CommunityChildren's Council must be direct con-sumers or family members; (2) Theremainder will represent education,mental health, and other service pro-viders; and (3) each CCC shall electa professional and a family memberto the State Children's Council.

CONCLUSION. Managed behavioralhealth care is increasingly becomingthe norm for public and private men-tal health systems. The policy docu-ments identified in the Family-Cen-tered Policy project's study that reflectthe movement towards consumer andfamily member participation inpolicymaking, are readily transferableto managed behavioral health carepolicies and practices. Children'smental health policymaking in themanaged behavioral health care arenarequires that, among others, youthconsumers, family members of childand adolescent consumers, people ofcolor, and advocacy organization rep-

resentatives have a seat at the table.And-in honoring these individuals fortheir time and their contributions-they will receive appropriate training,support and compensation.

MARILYN C. MCMANUS, J.D., M.S.W, ProjectManager, Family-Centered PolicyProject, and Editor, Focal Point. Fol-lowing thirteen years of service to theResearch and Training Center on Fam-ily Support and Children's MentalHealth, Ms. McManus recently accepteda new position with Oregon's Office forServices to Children and Families, 7825North Lombard Street, Portland, OR97203-3125, (503)731-4646 x2264(voice).

NANCY M. KOROLOFF, PH.D., Principal Inves-tigator, Family-Centered Policy Project,Research and Training Center on Fam-ily Support and Children's MentalHealth, Portland State University, PO.Box 751, Portland, OR 97207-0751;(503) 725-4157 (voice); (503) 725-4180 (fax); e-mail: [email protected]

SHIAL SEHRITY INIS ATM MEW KOSED CASE @HD_ SABILITIE

Pr he Social Security Administration (SSA) is currently conducting reviews of the changes in the Social Secu-rity Income (SSI) childhood disability program which were included in the welfare reform law of 1996.

The welfare reform law makes eligibility requirements stricter, and as a result SSA estimates that approximately100,000 children with disabilities will lose (or have already lost) their benefits.

A review completed in December of 1997 indicated that there were three key areas of concern: childrenclassified as having mental retardation, children with cases closed due to the caregiver's failure to cooperate,and a lack of clarity regarding the right to appeal SSA decisions. The study found that some children withmental retardation were having their benefits stopped because of reviewer errors, such as failing to look at allinformation and not considering the range of error in all test results. As a result of this finding, Social SecurityCommissioner Kenneth S. Apfel ordered the reevaluation of all cases in which benefits were stopped (or newapplications denied after the passage of the welfare reform law) to children with the classification of mentalretardation. These reviews began at the end of March of this year.

Additional errors were found in cases in which benefits were ceased due to the failure of the caregiver tocooperate. In these cases, a caregiver failed to take their child to a medical examination or did not respond tonotices from SSA. The review, however, found that in some cases not all of the proper contacts were made withthe caregiver before the benefits were ceased. Commissioner Apfel has initiated a review of all of these cases aswell to make sure that SSA made every effort to contact the caregiver.

Another area of concern was in the notification of the rights of caregivers. The review found that manyparents did not understand that they had the right to appeal when benefits were stopped and the right torequest that benefits continue while SSA reconsiders their case. As a result of this finding, new notices withclearer language as well as notification of legal resources were sent to parents in February 1998.

For more information, please contact the SSA at 1-800-772-1213.

FAll 1998 ,

FOCthOINT

FAR MOtools and strategies that the programpresents, are the best formula for en-suring a vision for the future. Thisvision focuses on the independence,integration, inclusion and productiv-ity of people with disabilities in theircommunities. The program is typi-cally run or funded by a state devel-opmental disabilities council orfunded by a private foundation.

The program has 128 hours ofinstruction provided over eight week-ends, with one weekend session eachmonth. This time commitment en-sures that Partners "learn how tolearn." "What works" (also known asbest practices) is a moving target.Continuous improvement of pro-cesses means that a person simplycannot any longer keep applying thesame model indefinitely. The topicsof the Partners programs are generalenough so that continuous learningis the aim of the session, not acquir-ing any specific set of knowledge. Thetime period between each sessionensures that Partners get a chance topractice their skills through home-work assignments and incrementalwork towards the completion of amajor public policy project.

WHY DID IT COME ABOUT?In 1987, Colleen Wieck, Execu-

tive Director of the Minnesota

BARLON EiNTER

"A o VANE+

HEATHIRECTIVE"

The Bazelon Center for MentalHealth Law has created a documentwhich mental health patients canuse to indicate what treatments theydo not want to have if they are in-voluntarily committed. On thisdocument, the patient can also in-dicate who they wish to select tomake their mental health decisions,such as a family member or a friend.The advanced directive form can beobtained for free on the BazelonCenter's web-site: www.bazelon.org/advdir.html

For more information, contactBazelon Center at (202) 467-5730.

RE OBJECT OF THAN POLIGovernor's Council on Developmen-tal Disabilities and Ed Skarnulis, Di-rector of the Developmental Disabili-ties Division at the MinnesotaDepartment of Human Services, werestruck by the leadership vacuumamong young parents and people withdisabilities (self-advocates). The av-erage age of members of national as-sociations on developmental disabili-ties was creeping steadily upwards.Few if any self-advocates were in-volved in setting direction for theseorganizations. The need for parentsand self-advocates to learn how tomake effective systems change wasevident. The gains of the disabilitymovement were at stake.

WHAT ARE THE QUALITYPRINCIPLES OF THE PROGRAM?

In order to ensure that the pro-gram meets its ultimate outcomes (in-dependence, inclusion, integrationand productivity for all Partners andtheir family members), the design ofthe program built in quality principlesthat served this end:

Experiential Learning: Partnerslearn by doing. They prepare and de-liver testimony to public officials ortheir representatives. They practicecatching public officials in the hall-way and getting their stand on an is-sue across in a few minutes. Both par-ents and self-advocates benefit fromthe experience of the other group.They use a variety of different learn-ing methods to acquire a very specificset of competencies.

Diversity: Partners groups are di-verse in experiences, disability types,geographic location, gender,. racialand ethnic backgrounds, income lev-els and education levels. Partnerslearn as much from the experiencesof others as from the curriculum.

National Speakers: Partners obtaintraining from speakers who provide anational perspective. These speakers arenot inhibited by their roles in the statewhere the program is operating - eitherthey are from outside the state or theirjob in the state is to make these specifictypes of changes.

CY CONTINUED

Best Practices: Partners learnabout what is possible, not about thecurrent system of services and sup-ports in their state or locale whichthey already know about. They breakout of the status quo and ask "Whatif...?"

Leadership: Partners acquireknowledge not just for the sake ofknowledge. They take things theylearn and take action for socialchange. They provide leadership fortheir communities. The program isnot about getfing the most servicesfor themselves and their families;rather, it is about getting what theyneed and making sure others have thesame opportunity.

Length of Time: Funders make acommitment to the Partners programsfor a full eight training sessions. Part-ners receive 128 hours of instructionover the course of a program year.

Sufficient Funding: Funderscommit to quality replications thatpay for all program-related expenses(meeting space, meals, accommoda-tions, respite and child care, andtravel expenses). This money sup-ports the other quality principles.Without addressing these concerns,Partners cannot take the first step to-ward participating.

Evaluation: Partners and speak-ers evaluate their experiences with theprogram. A baseline survey is takenof Partners when they start the pro-gram. They are surveyed again sixmonths following graduation withfollow up surveys thereafter. Theseresults are tracked and monitored forlong-term trends. Changes in the pro-gram are implemented based on theseassessments.

Not an Organization: Partners isa training program the real work ofgraduates is in the community, stateand national organizations. The pro-gram links them with networks andhelps them acquire the competenciesneeded to succeed. No national data-base of Partners exists. An individualcannot pay money to join. After com-mitting to the program and followingthrough with attendance and hard

VOLUME 12, HI

FOC OINT

nal evaluators to compare the activ-ity levels of Partners at a baseline be-fore the program, six months after theprogram and for up to five years there-after. Surveys mailed to Partners typi-cally have a high return rate. The re-sults are tabulated and analyzed forprogram improvements.

Second, program coordinatorsevaluate themselves and are evaluatedby the funding source. Most programsevaluate quarterly. This frequency al-lows programmatic and logistical is-sues to be corrected quickly and tothe greatest effect for participants.

Third, Partners evaluate present-ers after each session. The programcoordinator takes these suggestionsand adjusts program logistics beforethe next session as needed. Com-ments on presenters are used to de-termine who will present the topicsfor the next class.

WHAT HAPPENS TO PARTNERSONCE THEY COMPLETE THEPROGRAM?

Partners become systems changeadvocates. They use the skills and

abilities they have developed to influ-ence policies to make the lives ofpeople with disabilities better. A fewPartners graduates have served asKennedy Fellows in the United StatesSenate. These people provide the Sen-ate committees that address disabili-ties issues the critical expertise theyneed from people who know how thesystem works and how to make itbetter. Several Partners graduateshave been elected to local and statepositions. Many more have been ap-pointed to boards and commissionsthat directly set the terms of debatefor disability policy. Perhaps mostprofoundly, there are literally thou-sands of people in the United Satesand the United Kingdom who sharethe same expertise and are able tomake their own lives and the lives ofothers better.

Many states provide Partners withfunding for continuing education oropportunities to learn new skills asthey go through their systems changeactivities. These supports are an im-portant refresher that help individu-als continue to be effective.

WHERE HAS PARTNERS BEENREPLICATED?

Partners programs are currentlyoperating or being planned in forty-two of the United States and Territo-ries. Three states and territories areconsidering operating the program inthe future. Just four states and theDistrict of Columbia have never op-erated the program. There are six sitesin the United Kingdom that are in theplanning or operating phase. A pro-gram has been funded by UNICEF tobegin in the Philippines. To learnmore about Partners in Policymakingin your state or territory, or to getadditional information on the pro-gram, please contact either of the au-thors at:

TARA BARENOK & COLLEEN WIECK, PHA,

Governor's Council on DevelopinentalDisabilities, 300 Centennial OfficeBuilding, 658 Cedar Street, St. Paul,Minnesota 55155; (612) 296-4018(voice); (612) 297-7200 (fax); email:[email protected] or [email protected]; Web site: http://www.thirdageinc.com/indde

FAMI

EVOLVING R"amily involvement is a central

value of the system of care phi-losophy. However, making this a re-ality in states and communities rep-resents a significant challenge. In-addition to ensuring that families par-ticipate fully in services for their ownchildren, it is essential to hear theirvoices at all levels of planning andpolicy development. Colorado hasstrengthened family involvement atthe local and state levels through de-veloping Family Advocacy Coordina-tors, also referred to as Family Advo-ca tes, who work in an array ofagencies and environments.

These paid positions operate onthe premise that family-to-familymethods of providing support andadvocacy are a necessary complementto formal services. Family Advocatestypically are parents or family mem-

LY ADVOCACY COORDINAT

OLES IN COLORADO'S SYST

ORS:

EM OF CAREbers of children or adolescents whoare at risk or are current or formerconsumers of some aspect of the lo-cal service system. From the outset,they have operated on the belief thata partnership between families andservice providers is an essential aspectof a system of care. The approach as-sumes the need to have families repre-sented in policy and service develop-ment, and emphasizes organizingfamily support and advocacy networks.

This effort began at the state men-tal health level, and later moved intolocal communities through the men-tal health, juvenile justice and childwelfare systems. The Family Advo-cates have had a profound effect oneach of the systems, agencies, andcommunities in which they operate.Integrated with interagency councilsand service coordination teams, their

roles have evolved over time and beenmodified based on community needs,values, and resources.

STATE LEVEL DEVELOPMENTSupported through a federal Child

and Adolescent Service System Pro-gram (CASSP) grant, Colorado Men-tal Health Services (MHS), the statemental health agency, first establisheda state-level Family Advocacy Coor-dinator. This paid position, based atthe Mental Health Association ofColorado, focused on providing sup-port, advocacy, and education for par-ents and families. Much of this workinvolved organizing parents at thelocal level through community fo-rums, sponsoring state conferences,and providing support and advocacyto parents and families in accessingservices.

VOLUME 12,110.1

FOClitiOINT

work, an individual becomes a Part-ner and goes on to change the world.

WHAT ARE THE VALUES BYWHICH THE PROGRAMJUDGES ITSELF?

A quality Partners in Policymak-ing program is built on the inherenthuman rights and responsibilities ofpeople with disabilities. Every aspectof the training program must reflectthese values, otherwise the programis not living up to the funding source'sexpectations or the quality principles.

People with disabilities are peoplefirst. The disability should come sec-ond, if at all. Labeling goes against theprogram's purpose to promote bestpractices in disability services. If bestpractices are always changing, givingsomeone a static label by which theirlife is defined will be ineffective at bestand highly damaging to the person'sability to define his or herself at worst.

People with disabilities need realfriendships, networks and bonds,not just relationships with paidstaff. In this way, all Partners areentitled to establish the connectionswith each other and policymakersthat they need to succeed at mak-ing systems change.

People with disabilities must beable to enjoy full mobility and acces-sibility that allows active participationin community life. This includesphysical accessibility but goes beyondit. Learning methods and programmaterials must be modified so thateveryone has a fair shot at attainingthe skills they need as systems changeadvocates.

Continuity in the lives of peoplewith disabilities is extremely impor-tant. This continuity takes placethough families and neighborhoodconnections. Partners programs re-flect this need. Again, Partners isnot an organization to which peoplebelong or do not belong based uponmembership dues or other signs ofallegiance. It is a continuous pres-ence in the lives of people who havegone through the program, provid-ing the support and tools peopleneed to achieve their personal andsystems' change goals.

Dignity and respect for peoplewith disabilities is critical. How cana person expect to succeed at chang-ing policy and systems foi- the bet-ter if they cannot respect the otherpeople who are similarly promotingchange and who will benefit fromsuch changes? This also means thatPartners are encouraged to respectthemselves and their experiences inways that they may not have before.People with disabilities must be inpositions to negotiate to have theirwants and needs met. These posi-tions may be informal, like servingas an on-call advisor for apolicymaker who respects andneeds the opinions of a person withexperience on disabilities issues.These positions increasingly havebecome more formal, with Partnersgraduates taking on policymakingroles as elected and appointed officialsat local, state, and national levels.

Choice is critical for people withdisabilities in all areas of their lives.These choices are neither more norless than the rights people with dis-abilities have. People with disabili-ties must be able to live in thehomes of their choice with the sup-ports they need. Institutions andother settings with large numbers ofpeople living together without in-put into their living arrangementsare antithetical to best practices indisability services.

Productivity through employ-ment or contributions as commu-nity members are both the right andthe responsibility of people withdisabilities. People with disabilitieswork and succeed in competitiveemployment when this responsibil-ity is recognized by employers.

WHAT DOES THE PROGRAM'SCURRICULUM LOOK LIKE?

National speakers provide thetraining. Logistical and program ar-rangements are made by a coordina-tor. The program covers two broadtopical areas.

Life area topics give Partners de-tails on the best delivery practices. Forexample, an inclusive education ex-pert explains what works with chil-dren and young adults in classrooms.The other life area topics are assistivetechnology and positioning, competi-tive employment, independent livingand a home of your own.

Policy and systems topics intro-duce Partners to working with fed-eral, state, and county officials. Theylearn how to access policymakersthrough writing letters and providingtestimony. These tools are effectiveand proven strategies that build sys-temic change possibilities. Commu-nity organizing is a critical skill Part-ners learn. Parliamentary procedureis also covered, with emphasis onboth learning how to follow a meet-ing in which these rules are used andlearning how to use the tools for themeetings that Partners will lead them-selves.

Partners learn through role play-ing, group activities and small groupdiscussions. They practice giving tes-timony before actual legislators andtheir staff. They discuss issues andconcerns directly with state agencyemployees in a neutral setting. Home-work is assigned and partners reportback on their experiences and impres-sions so that a multiplier occursPartners both gain perspective onhow the system works and are ex-posed to others' perspectives. Partnersget practice at doing what they con-tinue to do after graduation advo-cating on behalf of themselves andtheir families.

HOW DO PROGRAMSENSURE THATCOMPETENCIES ARE MET?

In Partners programs, there is athree-prong approach to ensuringquality improvement. First, long-termevaluations are conducted by exter-

FAR MO

FOCAINT

The Family Advocacy Coordina-tor also served on the state CASSPAdvisory Council, which providesoverall guidance and policy recom-mendations regarding system of caredevelopment. Possibly the most im-portant function of this position wasmodeling how families could be apositive force in shaping policy andpractice in children's mental health atthe state and local levels. As a result,there is now a Colorado chapter ofthe Federation of Families forChildren's Mental Health.

MENTAL HEALTHThe successes of the state Family

Advocacy Coordinator soon led to therealization of the need for similarcommunity-based positions. A sec-ond CASSP grant provided the oppor-tunity for MHS to develop the role inlocal systems of care. Using commu-nity mental health centers as the baseof operations, the project fundedFamily Advocacy Coordinators inthree communities including urban,suburban, and rural sites.

Communities make use of theFamily Advocates in different ways,depending on local priorities. Activi-ties include attending IndividualizedEducation Program meetings, devel-oping support groups, and providingindividualized supports to families.One community located their FamilyAdvocate at a family resource center.As a result, she was highly accessibleto families of children not involvedin the public mental health system.

At the policy level, most localFamily Advocacy Coordinators par-ticipate on local interagency councilsand the state CASSP Advisory Coun-cil. On the CASSP Council they pro-vide an invaluable family-focusedviewpoint on policies and services,and keep others aware of new devel-opments involving families in com-munity-based services. As a tribute tothe effectiveness of the Family Advo-cacy Coordinators, each position con-tinued beyond the end of CASSP grantfunding. In one locale, the host com-munity mental health center hasadded an additional Family AdvocacyCoordinator.

An informal survey pointed outsome key issues that are important toconsider in future development ofmental health Family Advocates:O Family Advocates who have chil-

dren with mental health needsmust be able to balance the de-mands of their own family withthose of the families they serve;supportive agency environmentsare essential.

O Interagency councils and teams donot include families in all commu-nities. There is a need to better un-derstand agency and communityreadiness for full family involve-ment, and to develop strategies foraddressing potential barriers.

O There continues to be a questionabout whether Family Advocatesshould be employed by serviceagencies or by family organiza-tions. Understanding how familyorganizations and agencies canwork collaboratively will help inresolving this issue.

O Family Advocates can be very ef-fective when they work in non-traditional and informal ways tohelp families. A family-to-familyapproach can be very effective inwraparound services.

O Maintaining connections betweenlocal Family Advocates and statelevel supports is important. Fam-ily involvement requires consis-tent backing from both local andstate policymakers.

A recent evaluation of Colorado'smental health managed care programsuggests the availability of a FamilyAdvocacy Coordinator favorably in-fluences a family's perception thattheir child's service needs are met. Dueto the recognition of the key role theyserve, Family Advocacy Coordinatorsare being integrated into Colorado'sMedicaid capitation program. The re-cent Medicaid capitation request forproposals requires that Family Advo-cates be established at Mental HealthAssessment and Service Agencies,Colorado's managed care organiza-tions. These Family Advocates willprovide information and support tofamilies and children served throughthe capitation system.

JUVENILE JUSTICEThe development of Family Advo-

cacy Coordinators has also expandedto the juvenile justice system wherethere are significant numbers of youthin need of mental health services. TheColorado Division of Criminal Justice(DCJ), with support through the fed-eral Office of Juvenile Justice andDelinquency Prevention, now fundsFamily Advocates in four communi-ties. Collaborative efforts betweenDCJ and Colorado Mental Health Ser-vices allowed for joint developmentof the positions, and linking themwith existing Family Advocates andtraining opportunities.

Involved communities includethree in the Denver metropolitan areaand a city in the western region of thestate. Three of the Family Advocateswork at community-based youth andfamily agencies and the other at acommunity mental health center. Dueto the emphasis on increasing re-sources for minority youth and theirfamilies, Hispanic and African Ameri-can Family Advocates have worked inthese communities.

The juvenile justice Family Advo-cacy Coordinators participate on lo-cal interagency councils and servicecoordination teams focused on youthat-risk of involvement in the court,probation, and youth corrections sys-tems. Additionally, they do a consid-erable amount of work with other

®Mil 1999

1

FOCi4OINT

community agencies such as schools,home visitor programs, and culturallyoriented organizations. Efforts of theFamily Advocates involve diversestrategies to increase family involve-ment. These include increasing par-ent participation on interagencyteams, sponsoring family support andeducation teams, advocating foryouth in court, providing case man-agement services, and organizinggroups for children in elementary andmiddle schools.

Much of the work of the juvenilejustice Family Advocates aims at pre-venting children from becoming in-volved in youth corrections. In somecommunities there are considerableschool-based services facilitated byFamily Advocates, including familyand youth support groups. In one

BAZELON

BENEFITS

RENTER PUBLISHES

BO 0 KLET PARENTS

The Bazelon Center for MentalHealth Law has recently publisheda handbook for families and ad-voca tes which explains theSupplemental Security Income(SSI) system and the process forqualifying for monthly cash ben-efits for children with severe men-tal and physical disabilities. Thenew 1996 eligibility rules as wellas the process for appealing whenbenefits are denied are describedin easy to understand language.The handbook is also available inSpanish. The cost is $3 plus $2 forshipping. To order this booklet,please contact the Bazelon Cen-ter at (202) 467-5730 or writethem at:

Publications Desk, BazelonCenter for Mental Health Law,1101 15th Street NW, Suite 1212,Washington DC 20005-5992.

1111 eLEARINGH

Clearinghouse

telephone

WEIMAO

USE BILINGUAL

h ()hold to

assistance

Spanish.

available

53

announce

available

ediim

hthmaterials

Spanish.

community, parents of at-risk youthreceive training to work as supportgroup volunteers. Youth groups facili-tated by Family Advocates cover di-verse topics. These include conflictmanagement, teen pregnancy, drop-out prevention, career exploration,academic responsibilities, behaviorresponsibilities, and summer vacationplanning.

One parent described her family'spositive experience with a FamilyAdvocate:

The Family Advocate did a greatjob by giving us emotional sup-port and coordinated services forus at the beginning of our cri-sis, rather than later when theywould not have been as effective.The Family Advocate points outthe positives and gets parentsinvolved. (Excerpt).

CHILD WELFARESupported by state Child Welfare

Services, Family Advocacy Coordina-tors work in communities funded bythe federally sponsored Family Pres-ervation and Family Support pro-gram. The child welfare Family Ad-vocates work at various communityagencies including family centers,schools, and other community-basedagencies. Their efforts include assist-ing families in accessing a broad ar-ray of services that support at-riskfamilies, providing education materi-als, and coordinating local family ad-vocacy activities. In all, seventeencommunities participate in this effort,with some areas having as many asfive Family Advocates.

The child welfare Family Advo-cates work at various community re-source centers including schools andfamily centers. In one community, aFamily Advocate works on earlychildhood issues helping families ofyoung children with special needsaccess services and supports. In con-junction with the STATES Initiative,a new Interagency Family AdvocacyCurriculum will serve as a tool to in-crease skills and knowledge. Thecurriculum includes content on ad-vocacy, family development, self-empowerment, group and commu-

nity work, formal and informal sup-port systems, and working with ser-vice systems. The first training ses-sion took place in November 1997.

CONCLUSIONFamily Advocacy Coordinators

have significantly changed the land-scape of child and family services inColorado. Possibly the most impor-tant lesson learned is how FamilyAdvocates can increase the effective-ness of more traditional and formalmethods of helping families. Key is-sues for the future include increasingFamily Advocates' accessibilitythrough normalized community-based locations, maintaining linkswith state and local policy and ser-vice councils, and connecting Fam-ily Advocates with managed care or-ganizations. Also, there is a need toexplore ways that Family Advocatescan work in conjunction with familyorganizations.

The development of Family Ad-vocates in mental health, juvenile jus-tice, and child welfare is based notonly upon a recognition of their ef-fectiveness. It also underlines theneed for such family-focused re-sources and leadership across agencyboundaries. Families of children withmental health needs often find them-selves involved with various systems,or wondering where to access help.Family Advocates can offer a bridgefor families needing information anda guide to help them obtain the sup-ports they need. With Family Advo-cates working in partnership withcommunity agencies, the goal of fam-ily involvement in Colorado becomesmore of a reality.

WILLIAM BANE, M.S.W.,

Program Adminis-trator, Child & Fam-ily Services, Colo-rado Mental HealthServices, 3824 WPrinceton Circle,Denver, CO 80236voice: (303) 866-7406; fax: (303)866-7428; e-mail: [email protected]. us

J4VOLUME 12. NO.1 _12

FOCAINT

HAWAII FEDERAL CO URT CONSENT DECREE M

AND FAMILY M

flawaii Families as Allies (HFAA)is a non-profit, parent-run state-

wide organization as well as the Ha-waii chapter of the Federation ofFamilies for Children's Mental Health.HFAA is the only organization in Ha-waii focused exclusively on the needsof children and youth with emotional,mental and behavioral disorders andtheir families. In fact, all of our staffare parents and/or foster parents ofchildren with serious emotional dis-orders. HFAA has been known tofamilies and professionals as an orga-nization that supports collaborativelybuilding systems of care which arechild-centered and family-focused,culturally competent, coordinated,and community-based. Since 1988HFAA has served as the statewide re-source center for policy and techni-cal assistance to improve service de-livery and outcomes for childrenand adolescents with or at-risk ofserious emotional disorders andtheir families.

In May 1993, a lawsuit was filedin United States District Court byseven parents on behalf of their chil-dren and 21 organizations statewide(including Hawaii Families as Allies).The lawsuit charged the State of Ha-waii and its Departments of Educa-tion and Health with failure to pro-vide educational and mental healthservices to children and adolescentswith disabilities in accordance withthe Individuals with Disabilities Edu-cation Act (IDEA) and Section 504 ofthe 1973 Rehabilitation Act. The law-suit sought to represent children withdisabilities who are eligible for andin need of educational and mentalhealth services but for whom pro-grams, services and placements wereeither unavailable, inadequate, or in-appropriate because of the lack of acontinuum of programs and place-ments which the State is mandated toprovide through its agencies. Manyenvisioned that this lawsuit wouldalter the role of family involvement

EMBER PARTICIPATION IN

in policymakingthat Hawaii wouldrevolutionize family-centered policy.

The State of Hawaii had a periodof twenty days to respond to the com-plaint. However, even before its an-swer to the complaint had been filedwith the Court, the State began settle-ment discussions with attorneys forthe Plaintiff Class. In May 1994, bothparties filed motions for summaryjudgment. The Court granted plain-tiffs' motion (in part) and determinedthat the State of Hawaii and its De-partments of Education and Healthhad "systematically failed to providerequired and necessary educationaland mental health services to quali-fied handicapped children of the Stateof Hawaii in violation of the Individu-als with Disabilities Education Actand the Rehabilitation Act of 1973."Felix v. Waihee, 1994. This holdingwas based, in part, on the State'sacknowledgement of deficiencies inthe system of care.

In October 1994, the court ap-proved a consent decree jointlydrafted by the State and attorneys forthe Plaintiff Class. Known as the FelixConsent Decree, the document setforth the terms and conditions ofsettlement intended "to ensure thatthe Plaintiff Class has available tothem a free appropriate public edu-cation they are entitled to under IDEAand Section 504, and that a system ofcare which includes a continuum ofservices, placements, and programsfollowing the principles of the HawaiiChild and Adolescent Service SystemProgram (CASSP) is created for thePlaintiff Class." Felix v. Waihee, Con-sent Decree 1994. The consent decreefurther contemplates that "serviceswill be child and family centered in-volving and consulting families inplanning, evaluation, training, treat-ment, and support functions," andthat "when necessary, services shallbe provided to class members and par-ents to enable them to participate aspartners. Such services shall include

ANDATES CONSUMER

POLICYMAKING

advance discussions, scheduling con-sideration, interpreter's services, as-sistance with understanding writtenmaterials, and other accommodationsas needed." Felix v. Waihee, 1994.

In order to fulfill its obligationsunder the consent decree, the Stateagreed to develop a plan of operationthat describes the specific design forthe new system of care, and includesa specific schedule with critical mile-stones for implementing the design,known as the Felix ImplementationPlan. The Implementation Plan,which was approved by the Court inOctober 1995, established:

1. Community Children's Councils(CCCs)

o Community-based (16 CCCs state-wide);

o At least 1/3 direct consumers orfamily members;

o Representatives reflective o f acrosssection of community agen-cies, service providers, civic andreligious groups;

O Community participation in needsassessment, service system plan-ning, budget recommendations andquality management activities;

o Arena for child-serving agenciesto integrate efforts in system de-velopment and service delivery;

O Local forum for setting commu-nity-based priorities and plannirig;

O Appoint representative(s) to StateChildren's Council (SCC)

2. State Children's Council (SCC)o Comprised of representatives of

each CCC;o Integrate decisions and recommen-

dations from CCCs into statewideplan to submit to Cabinet LevelCouncil (CLC)

3. Cabinet Level Council (CLC)o Representatives of State depart-

ments to provide leadership;o Remove barriers to effective ser-

vice delivery4. Operational Management Team

(OMT)

® 13FAR 1998

o Executive body with authority tomanage and implement policiesand recommend changes;

o Comprised of deputy directors, as-sistant superintendents, other ad-ministrators;

o Report to Director of Health andSuperintendent of Education

5. Community Children's CouncilOffice (AKA State Implementa-tion Team)

o Provide technical assistance andsupport to CCCs and SCC;

o Oversee implementation of com-munity and parent training;

o Coordinate staff training;o Interface between CCCs, SCC,

OMT and other State agencies inthe preparation of the ExecutiveBudget;

o Ensure parent participation in theabove activities.

During Fall 1995, the "TogetherWe Can" awareness training was of-fered in seventeen communities state-wide. The training was intended togenerate an "awareness" that educa-tors and service providers needed todo things differently when workingwith youth with disabilities and theirfamilies, and that system reform oc-curs as individuals change, one per-son at a time. Each training was com-prised of deliberately selected teamsof facilitators and participants to

model interagency collaboration andparent-professional partnership.Training sites closely matched the ar-eas in which each CCC was to be es-tablished. Thus, after creating thisawareness via a soft-sell approach toa gathering of community stakehold-ers, training participants were invitedto attend the inaugural CCC meetingin their community. Several HawaiiFamilies as Allies staff and boardmembers served as training facilita-tors, while others attended thetrainings in their respective commu-nities as family participants.

Since early 1996 the sixteen CCCshave been meeting to determine theircomposition and structure, establishtheir leadership, develop initial gov-erning rules and local procedures, andset priorities for the activities theyundertake. Their common vision is todesign a system of care in accordancewith the Felix Consent Decree andImplementation Plan which embracesthe CASSP values and principles tomore responsively meet the multipleand changing needs of youngsters intheir community. While all sixteen ofthe CCCs have been operational,some have progressed more rapidlythan others with regard to organiza-tion and composition, consumer/fam-ily involvement, leadership develop-ment, coalition building andconsensus development.

MIMS AS ALLIES

"Families working

together for

chi, & von "

5=Q1

Members of the Hawaii Family as Allies

Support from the State via theCommunity Children's Council Office(CCCO) as stipulated in the FelixConsent Decree and ImplementationPlan has been fragmented and mini-mal. Although consumer/family par-ticipation has been a major concernfor several of the CCCs, the trainingfor "class members and parents toenable them to participate as part-ners" (Felix v. Waihee) has not oc-curred despite the offer made by Ha-waii Families As Allies that itpossesses the knowledge and exper-tise to conduct this training for theState. It did not take long for every-one to realize that-if working parentswere expected to participateCCCmeetings could not take place during9:00 A.M. to 3:00 PM. banker's hours.It did, however, require many monthsof negotiating for parents to convincethe State that families need reimburse-ment for childcare and other expensesto enable them to attend CCC meet-ings in the evening.

The lack of administrative supportand technical assistance from theState has also left CCCs struggling tofind ways to disseminate notices andinformation in a timely manner, orwithout the knowledge and means toconduct needs assessments. CCCswho are unable to determine commu-nity needs will find it difficult to dothe service system planning, budgetrecommendations and quality man-agement activities specified in theImplementation Plan. Families haveinvested a considerable amount oftime and energy in CCC participationbelieving this is the vehicle for com-municating their needs and improv-ing services for their children. Unlessthe State takes the necessary steps towholly support and empower theCCCs to accomplish the Implemen-tation Plan goals and objectives, thespirit of the lawsuit will be left unful-filled.

Based upon anecdotal informationthat we receive from families and oth-ers in the community, there remainsan unwillingness by educators andother service providers to view par-ents as allies and equal partners inplanning services for their children

VOLUME 12, NO.1 14

with special needs and in the deci-sion-making processes. Parents con-tinue to attend meetings and are pre-sented with prepared IndividualizedPlans (IEPs) or treatment plans withwhich they have had no input, but forwhich their approval is sought on thespot.

Two parents were invited by theState Department of Education (DOE)to participate on a panel to interviewcandidates for the position of statespecial education administrator. Theidentity of the candidates and theDOE's qualification requirementswere withheld from the panel mem-bers until 30 minutes prior to the firstinterview. Each panel member wasasked to select a single question(which was prepared by thc DOE per-sonnel office staff) to ask the candi-dates. The candidate who was finallyselected vacated this position after sixmonths, and his replacement was ap-pointed by the Superintendent ofEducationthus bypassing the inter-view process altogether.

The State Department of Health(DOH) is currently seeking yet an-other Chief for its Child and Ado-lescent Mental Health Division(CAMHD). Various consumer/par-ent and advocacy organizations re-ceived correspondence fromCAMHD requesting them to cometo a consensus among themselvesregarding the nomination of ONEparent to serve on the interviewpanel for CAMHD Chief. They wereinformed that CAMHD reserved theright to accept or decline the par-ent nominated. The organizationswere given one week to nominatethe parent.

Last summer the DOE and DOHjointly drafted policies on the refer-ral of students for IDEA/§504 evalu-ations and the responsibility andidentification of care coordinators.Knowing that the CCCs meetmonthly, the draft policies were dis-tributed to each CCC for review andinput due in two weeks. I know thatmy personal suggestions and recom-mendations submitted to DOE/DOHfor consideration were not incorpo-rated into the final policies. In fact,

FOC OINT

the final policies did not appear sub-stantially different from the draft.

I also had the opportunity to par-ticipate in a work group during Au-gust and September that was directedto develop a single policy for carecoordination that could be adopted byall state agencies that serve children.I suggested the policy state that whenagency personnel are paid for theirtime, expertise and expenses, thenfamily/community members whoserve as care coordinators shall like-wise be compensated. After all, theDOE already allows parents and com-munity members to be volunteer carecoordinators if they choose, and theIDEA amendments of 1997 supportthe concept of training and hiringparaprofessionals, especially in caseswhere professionals are in short sup-ply. It generated some poignant dis-cussion but, in the end, the agencypersonnel vetoed my suggestion.

Even before the State of Hawaiifiled its answer to the Felix v. Waiheecomplaint, state administrators wereaware things needed to be done dif-ferently when it came to educatingstudents with disabilities. By enteringinto the Felix Consent Decree the Stateof Hawaii pledged its affirmative com-mitment to abide by the IDEA andSection 504 and to embrace theCASSP values and principles whileproviding educational and mentalhealth services to students with dis-abilities. In the two years since thecourt approved the Felix Consent De-cree there have been numerous com-munity forums, school-level dia-logues, and public access televisionproductions that emphasized the needfor meaningful parent participation,but the pace of system change has yetto meet the urgency of need felt bymany parents whose youngsters haveemotional and behavioral disorders.Linda Colburn, Felix OperationsManager, attributes our dilatory rateof progress in part to "institutionalinertia"several large systems (DOE,DOH, etc.), each with its unique char-acteristics, which are resistant tochange.

From our standpoint, under theguise of embracing the CASSP values

ff'CI /ARK Cal_ "DR

The Federation of Families

for Children's Mental Health

presents

10th Anniversary Annual

Conference Celebration!

November 10-22, 1998J.W Marriott HotelWashington, D.C.

Training session on techniquesfor successful lobbying(Pre-arranged) appointmentswith your congressional repre-sentatives and reception on Hill28 workshopsOriginal musical, Our YoungBlack Men Are Dying and No-body Seems to CareGeoffrey Canada, acclaimed

flauthor of FistStich Knife Gun: APersonal Historyof Violence inAmerica will givethe keynoteaddress

For more information and regis-tration materials:

FFCMH Conferencedo B-C Family Productions16 Sagamore PlaceHillsborough, NC 27278(919) 477-3677Fax: (919)479-5247

and principles and compliance withIDEA and Section 504, attempts bythe State of Hawaii and its depart-ments thus far to involve parents havebeen merely obligatory. Empower-ment and full inclusion of families hasnot yet happened in a truly meaning-ful way. But as parents, we persevere

for our children and for the sys-tem of care that serves them.

LAVERNNE NAKAMURA, Hawaii Families asAllies, 200 N. Vineyard, Suite 300, Ho-nolulu, Hawaii 96817; (808) 521-1846(telephone).

FAR 1998

FOCAINT

CHILD AND ADOLESCE

n the Fall of 1993, the Departmentiof Mental Health and Developmen-tal Disabilities (DMHDD) undertooka major initiative to establish local ar-eas and coordinating networks forchildren and adolescents (C&A) inneed of mental health services. Thedirector of the Department of MentalHealth, Jess McDonald, developed theconcept in partnership with the Illi-nois Department of Children andFamily Services, the Illinois StateBoard of Education and parents ofchildren with severe emotional disor-ders. The goal of the Local Area Net-works of Care was to develop a uni-fied, publicly-funded, community-based mental health service systemwithin designated geographic areas ofthe state. Families then would be ableto obtain services for their childrenin their own community, and serviceplans would shift from being agency-driven to family-driven. The State ofIllinois was divided into 62 local areanetworks (LANs) and principles forthe development of a C&A LAN wereformulated.

The Steering Committee is thedecision-making body of the C&ALAN. Membership consists of "stake-holders" or persons who have an in-terest in improving outcomes for chil-dren with serious emotionaldisorders. Membership includesmental health centers, child welfareagencies, special education direc-tors, parents and foster parents, rep-resentatives from juvenile justice,substance abuse and public health.The steering committee was to reflectthe culture of the community it rep-resents. Most steering committeesmet monthly and the meetings wereopen to the public. Meetings were attimes and locations convenient to themembership. In order for each com-munity to reflect the stakeholders andneeds of their community, (1) mem-bership of the steering committee isnot dictated by policy; and (2) eachLAN is expected to identify stake-holders to bring to their individualtables. Each LAN has at least two co-

NT LOCAL AREA NETWORK

if

1

111111111

,

conveners (stakeholders responsiblefor conducting the LAN meetings)elected from the membership of theLAN. Since the beginning of the LANmovement, parents have an equalopportunity with agency members tosit as co-conveners, however in thepast five years, only one LAN in Illi-nois has a parent who, in 1997, be-came a co-convener.

LANs also include flex fund com-mittees. Most LAN's have one suchcommittee, however, geographicallylarger LAN's have divided into asmany as four flex fund committees.These committees decide the requestsfor flexible dollars used to providecommunity services for the child thatare unavailable through traditionalmeans.

The use of flex funds was criticalin the plan for success in community-based systems of care. In order for achild to return home from a residen-tial center, or in order to maintain achild in crisis in the community, of-ten creative, non-traditional serviceswere needed. Agencies and schoolsare tied to policy and program regu-lations and often cannot provide theseunique or non-traditional servicesthrough their normal service provi-sion. Flex funds were made availablein order to assure that all service needscould be met in the community.

Flex funds are the result of pooledpublic funding with contributionsfrom the Department of Mental

S OF CARE IN ILLINOIS

Health, the Illinois State Board of Edu-cation and the Illinois Department ofChildren and Family Services.

The Interagency ManagementTeam (IMT) provides guidance to theLANs. The purpose of this team is togather stakeholders on a statewidelevel and offer information, supportand technical assistance to the LocalArea Networks of Care. The originalmembership of the IMT included arepresentative from each of the threelead agencies. No parent representa-tion was on the original InteragencyManagement Team. The first parentparticipant began attendance in 1996through the Illinois Federation ofFamilies. Since that time, the mem-bership of the IMT has grown to in-clude many members on a local levelas well as on a state level. Represen-tation from the Illinois State Board ofEducation Behavioral Disorder Net-work comes from each of the four re-gions of the Illinois State Board ofEducation. The Community Residen-tial Services Authority regularly at-tends, as well as special groups fromtime to time. The Interagency Man-agement Team meets monthly. Eachof Illinois' four regions (North, South,Central and Chicago Metro) takesturns hosting the meeting. This givesstakeholders the opportunity to dis-cuss the innovative services each areaof the state provides as well as sensi-tizing members to each region'sunique needs.

The structure of LANs was devel-oped following Child and AdolescentService System Program (CASSP)principles and the system of care de-veloped through the Alaska Youth Ini-tiative that incorporated plans for allof the children involved. Guidelinesand principles for the LAN move-ment were developed and each LANwas encouraged to also developtheir Network of Care to reflect theneeds and strengths of their indi-vidual communities.

Originally, the guiding principles fordevelopment of a C&A LAN included:

1. The system of care will be

VOI.UME 11, NO.1 16

FOCAINT

firmly grounded in a philosophy ofservices which is child-centered, fam-ily-focused and community-based.

2. The role of parents should bethat of active participants who areinvolved in service system planning,service provision and evaluation.

3. Participation in a C&A LANplanning process will be open andaccessible to families, child and fam-ily advocates, and broad-based child-serving providers.

4. Each LAN will assure adequaterepresentation of parents and childrenwith emotional disorders, and mem-bers of culturally diverse racial andethnic groups who are representativeof the LAN population, in planningand implementation activities.

The rationale behind a unified ser-vice system was:

1. To clarify which agencies withina geographic area will assume respon-sibility for assessment, triage, andcomprehensive treatment of childrenand adolescents in DMHDD's prior-ity populations.

2. To eliminate gaps in service pro-vision so that an array of core mentalhealth services are available and ac-cessible for the most disturbed andhighest risk child and adolescent cli-ents in the most effective and leastcostly settings.

3. To improve communicationwith parents of children with emo-tional disturbances, to facilitate accessto appropriate services, and to im-prove the flow of information withinthe child/family provider communityserving the same client or population.

4. To assure that transfer of indi-viduals between service providers ismade with the least disruption of ser-vices to the client.

5. To assure that conflicts betweenor among providers, consumers, oradvocates within the service systemare mediated by formal and informalmechanisms.

FOUR YEARS LATERThese guiding principles hold true

today. Over the past four years, nonew guidelines for formation of theC&A LANs have been written. Guide-lines to clarify the allotment of flex

funds and the reporting of those fundshave been added. Over the past fouryears, there have been many successesand challenges in the development ofthe Local Area Networks of Care. Thelargest challenges involve:

1. The use of flex funds andthe accountability of thosefunds;2. The involvement of parentsas decision makers in the Lo-cal Area Networks of Care; and3. Interagency collaborationand accountability for inter-agency decisions.In an effort to meet these chal-

lenges, several steps have been taken:(1) The Interagency Management

Team has developed guidelines thattie the expense of flex funds to theservice plan developed by the childand adolescent team;

(2) The Illinois Department ofChildren and Family Services has en-tered into an agreement with the Illi-nois Federation of Families to recruit

and train foster parents to representthe parent movement at local areanetworks of care;

(3) The Interagency ManagementTeam Evaluation Group has beenformed and is monitoring the evalu-ation that is being done across thestate to track local and state level ac-tivities;

(4) Each LAN has been asked toappoint a lead agency for their area.This lead agency will carry the liabil-ity insurance necessary to cover fa-cilitators who are autonomous andallows for parents to serve in differ-ent capacities;

(5) There is ongoing, unifiedwraparound training throughout thestate. With each LAN participating,there will be a common definition ofwraparound and will allow for a con-sensus on the service delivery system;

(6) Each LAN is being asked toexpand the number of stakeholdersat the table. The example of the In-teragency Management Team and the

PACER MTN

he Parent Advocacy Coalition for Education Rights (PACER Center),has been awarded a $1.2 million per year grant from the U.S. Depart-

ment of Education for the next five years to establish the Technical Assis-tance Alliance for Parent Centers (The Alliance). The Alliance will pro-vide parent centers with technical assistance, disseminate information,encourage collaboration between parent centers, help to develop Internetaccess to the parent centers, and will work towards systems change andschool reform. The Alliance will also collaborate with national clearing-houses, regional resource centers and other education-related projects toidentify approaches for effectively working with parents and educatorsand to distribute this information to parent centers.

The Alliance will operate through four regional centers. These centersare: Northeast Regional Center (Parent Information Center, Concord, NH),Midwest Regional Center (Ohio Coalition for the Education of Childrenwith Disabilities, Marion, OH); South Regional Center (Partners ResourceNetwork, Inc., Beaumont, Texas), and West Regional Center (Matrix Par-ent Network and Resource Center, San Rafael, Calif.). The Alliance canbe reached on the Internet at www.taalliance.org or by calling their tollfree number, (888) 248-0822.

PACER Center is a coalition of 20 disability organizations with thegoal of providing training, advocacy, and information for families of chil-dren and young adults with disabilities. The Center also serves as a re-source for professionals in the fields of education, health, and humanservices. On September 17, the PACER Center will be celebrating its twen-tieth anniversary! PACER Center can be reached on the Internet atwww.pacer.org or by calling their toll free number, (800) 53-PACER.

FAIL 1998 17

ongoing training will help encouragethis participation and help expand thelevel of community commitment tothe LAN movement.

Parents' roles have changed inmany ways since the beginning of theLAN movement. Parents are more in-volved in the development of the ser-vice delivery plan and many parentshave taken lead roles in their LocalArea Networks of Care. In one LAN,a parent sits as a co-convener.

In six LANs, family resource cen-ters have been formed. These centersallow families to offer parent-to-par-ent support and information. Manyof the resource centers provide facili-tators, mentors and resource develop-ers to the child and adolescent teams.

The formation of these resource cen-ters has helped enhance the parent/professional partnership and builttrust between collaborators.

As the Local Area Networks ofCare approach their fifth year of ex-istence, we hope that the networkswill continue to grow and reach outto include additional communitymembers. Parents continue to playimportant roles in the identificationand recruitment of necessary stake-holders and in the expansion of theLocal Area Networks of Care. Theforward movement of the LAN is theproduct of a deep commitment fromour Illinois Department of Childrenand Family Services, the Illinois StateBoard of Education, the Department

of Human Services, national leaderslike Lucille Eber, and parents whobelieve this service delivery systemcontinues to provide better outcomesfor children and their families.

KAREN GORA, Director of Illinois Federa-tion of Families Parent of two childrenwith serious emotional challenges. Illi-nois Federation of Families has been theparent organization present at all of the62 local area networks of care and mem-ber to the interagency managementteam as well as a partner in the com-munity wraparound initiative (one ofthirty-one hub sites across the countryinvolved in demonstration grants fromthe Center for Mental Health Services).(630) 858-1649.

PARTNERS AT THE POLICY TABLEhe story of the Massachusettsfamily movement officially began

in 1989 when the Department ofMental Health (DMH), the state men-tal health authority, funded a staff po-sition for the Parent Professional Ad-vocacy League (PAL). The goal of thiseffort was to provide parent-to-parentinformation and referral, organizeparent support groups on a peer-basedmodel, and develop the parent per-spective as a key element of publicpolicy discussions. In 1992, DMHused federal block grant funds to cre-ate parent advocate positions in twoof seven DMH Areas, and later ex-panded to all the DMH Areas.

Today, within the DMH system,parents are represented on advisoryboards internal and external to theDepartment. They are involved in as-sessments of the existing systems ofcare, and in the reconfiguration of theservice array and development of newprogram designs.

Parents are represented on all pro-posal review committees related tochildren's mental health service pro-curement. The role of families in pub-lic policy discussions, however, rep-resents the most significantinnovation in the state's family in-volvement, particularly as it relates tomanaged care.

At the direct service level, parentshave served as coaches to other par-ents. They have proved effective inhelping families participate effectivelyin the service planning process. Par-ent advocates have also linked fami-lies to other community resources forchildren with mental health problemsand modeled advocacy skills.

The latest evolution of the parentrole is in its introduction to the inter-agency world of child welfare and ju-venile justice. DMH and the Depart-ment of Social Services (DSS) areexpanding statewide a pilot projectthat is targeted to youngsters withserious emotional disorders who areon the brink of out-of-home place-ment yet who fall outside the purviewof either the child welfare or mentalhealth agencies. A jointly funded as-sessment and crisis stabilization ser-vice has the authority -post assess-ment to assign the child and familyto a specific state agency. This pro-gram incorporates parents as familypartners from the first day of the as-sessment.

Parents, along with DMH andDSS, participate in the hiring of theproject director, are members of thestatewide Steering Committee andserve on all local advisory commit-tees. Family partners are linked with

incoming families to offer supportand guidance, which can be main-tained long after the assessment ends.Feedback from families has all butcemented this role as a core part ofthe program model. At a meeting ofDMH and DSS field leadership inOctober 1997, which was convenedby the Commissioners of both agen-cies, staff were introduced to the ser-vice model and heard from their peersabout its successes in the pilot site.The parent presentation at the meet-ing represented a first in child wel-fare circles. Linda Carlisle, Commis-sioner of DSS, in a post-meetingthank-you to the organizers and pre-senters, wrote: "I finally understandwhat the family partners dowe atDSS can learn a lot from this model."

At the Department of Youth Ser-vices (DYS), the Massachusetts juve-nile justice agency, a beginning stepis being taken to offer parent supportactivities to parents of youngsters inDYS custody who have mental healthproblems. The lengthy developmentprocess suggests some trepidation;however, planning is proceeding. PALhas been the motivational organizingentity and continuing advocate forthis new direction.

A new and promising direction forinteragency focus is in the develop-

MIME 12. NO.1

rockkoINT

ment of outcomes for children whoreceive services from multiple sys-tems. DMH has convened a processwith DSS, Medicaid, MassachusettsBehavioral Health Partnership (theMedicaid managed care entity), pro-vider groups and trade associations,and families to decide on a standard-ized tool that will be used by all pub-lic purchasers. There is the potentialfor parents to assume a unique lead-ership role in crafting family relevantoutcomes.

In my view the key contributionsto the growth and significance of thefamily role in the mental health de-livery system for children in Massa-chusetts are the following:

1. The commitment of top lead-ership. A sense of vision of the po-tential and the possible willingness tosimply say "this shall be" to those lessable to believe in the vision. A "feel-it-in my bones" belief in the rightnessof the direction. Without that, it can'twork because it's too hard and toofrustrating. Our experience showsthat, over time, the case is made andthe impact is clear. Top level commit-ment must then translate into middlemanagement responsibility for pro-viding the needed technical assis-tance, troubleshooting, and commu-nication up and down the state mentalhealth authority, as well as thechildren's mental health community.

2. Money. It takes one or moreindividuals on a payroll to assure theneeded focused and persistent effort.It takes travel, occasional hotel costs,phones, a computer, copying avail-ability, supplies etc. etc. DMH nowspends $800,000 on activities relatedto supporting and working with par-ents as partners in direct services andpublic policy

3. A willingness to capitalize onevery opportunity to include theparent voice at every relevant table.Initially PAL needed DMH to createthe seat at the Medicaid managed caretable. Once set, with all parties accli-mated, DMH could retreat. Now, PALSextraordinary experience and solidreputation as an important contribu-tor will assure its continuation in therole. DMH is here if needed. We con-

ThePaientLeadership

TrainingInstitute

The Parent Leadership Training Institute (PLTI) works toprovide the skills necessary for parents to become advo-cates for their children. Through a 20-week course and apracticum in a community setting, parents are taught thebasics of democracy, their rights, and the skills necessary towork with media and all levels of government in order tohave an effect on public policy. The PLTI training programseeks to develop in parents "the capacity to interact withincivic society with purpose and positive outcomes for chil-dren." The PLTI is a multi-generation strategy, with each

class of graduates serving as mentors for the following class.Participants in PLTI classes vary in age from teen parents to grandpar-

ents, and come from a wide range of backgrounds, with some being adop-tive parents, single parents or step parents. The program is parent-based,and applications are only accepted from individual parents and not frominstitutions. Child care and other family supports are provided to classparticipants. The training is not specific to any one issue, but insteadseeks to train parents to advocate for any issue of concern to them and totheir children. For more information on the PLTI, please contact: TheCommission on Children, 18-20 Trinity Street, Hartford, CT 06106 orcall (860) 240-0290.

tinue to debrief, debug, and re-design.Currently, DMH is bringing the par-ents to the interagency table. We en-vision the same process will unfoldthere as it has within DMH.

Our state has traveled far in thelast eight years and yet it is clear weare only beginning. The changinghealth care environment suggestsmore and different players at thetables of the future. This year thequestions posed are:

How do we think about influenc-ing the HMO's as they become morecentral to our population's care? Howdo we respond to providers whosecompensation is increasingly re-stricted to face-to-face interventions?Who pays for the value-added timeof including parents, at times conve-nient to them, at the policy table?How do we interface with the otherfamily initiatives and with health careinitiatives? What is the best structurefor continuing family advocacy?

Eight years ago, and each ensuingyear, we have posed a different set ofquestions. Given the sensitization ofpolicymakers and caregivers that hasoccurred over time, we have movedfrom the point of trying to convince

policymakers to invite parents to thediscussion table to the point of in-cluding parents in all substantiveplanning committees, task forces,and review bodies. The success ofthis venture has been nothing shortof remarkable.

As family advocacy has grown insophistication and effectiveness, thechallenges that family advocates nowtake on in Massachusetts are at theforefront of children's mental healthpolicy. For professionals and familiesalike, the process has been a step-by-step chipping away at perceivedopinions and beliefs about familyinvolvement.

JOAN MIKULA hasbeen the AssistantCommissionerfor Child/Adoles-cent Services atthe Massachu-setts Departmentof Mental Healthsince 1985. Shecame to the public sector with experiencein education, juvenile justice and childwelfare and views herself as a professionalfamily advocate. (617) 727-5660 x543.

FALL 1990

foCkAINT

RHODE

FAMILY MEM

hough Rhode Island is often referred to as the smallest state in

the nation, it has strong values, andan enormous commitment to the wellbeing of children and families. His-torically, policymakers in the GeneralAssembly have consistently held aproactive view toward developing andimplementing laws that ensure thequality of life for its citizens. In 1980,the Department of Children, Youthand Families (DCYF) was created bythe state legislature, effectively merg-ing children's programs previously ad-ministered by four different state de-partments, in response to publicdemand that there be one agencysolely dedicated to the protection andsupport of the needs of children andfamilies. Since its inception, the De-partment has evolved and trans-formed to meet the ever-changingneeds of an increasingly complex so-cial environment.

In 1986, the Division of Children'sMental Health was created to respondto the mental health needs of chil-dren, and new programs and serviceswere developed. These mental healthservices are available to children andtheir families in Rhode Island, regard-less of their status with DCYF. Today,the Department of Children, Youthand Families in Rhode Island is a uni-fied state agency that has responsibil-ity for child welfare, children's men-tal health and juvenile justiceservices.

CHILDREN'S MENTAL HEALTHSERVICE SYSTEM

The Department's responsibilityregarding children's mental health isto design, implement and monitor astatewide system of care for childrenand youth requiring mental healthservices. Our responsibility also is toplan a diversified and comprehensivenetwork of programs and services tomeet the needs of children with seri-ous mental, emotional or behavioraldisorders; to provide the overall man-agement and supervision of the state

ISLAND'S EFFORTS TO PR

BER PARTICIPATION IN PO

OMOTE

LICYMAKING

program for children with mentalhealth needs; to promote the devel-opment of programs for preventingand controlling emotional or behav-ioral disorders in children; and to co-ordinate the efforts of several state de-partments and agencies to meet theneeds of children requiring mentalhealth services. Children who areplaced in the custody of the Depart-ment due to abuse, neglect, depen-dency or delinquency, as well aschildren who remain in the custodyof their parents or legal guardians,are eligible for services.

The present system of children'smental health services is organized ona community-based level to provide24-hour emergency services andscreening for inpatient psychiatrichospitalization; but, importantly,there is a community-based programcomponent that works to prevent out-of-home placement. Our Children'sIntensive Services (CIS) componentis a six-month program which pro-vides a vast array of traditional andnon-traditional therapeutic servicesfor the child(ren) and family. The CISprogram, emergency services, andscreening for hospitalization, are de-livered through contracted serviceswith eight local community mentalhealth centers located throughout thestate. The Department of Children,Youth and Families' Division ofChildren's Mental Health and Educa-tion operate from a centralized officein Providence, the state's capital.

In addition, there are eight LocalCoordinating Councils (LCCs), con-tracted within the community men-tal health catchment areas. The LCCis a network of providers, families,advocates and community organiza-tions that work together to developa coordinated system of care forchildren and youth with seriouschallenging behaviors, with the goalof preventing out-of-home and out-of-community placements. TheseLCCs evolved from the Child andAdolescent Service System Program

(CASSP), which was begun in RhodeIsland in 1991, as part of theDepartment's move toward commu-nity-based partnerships with familiesand providers.

The guiding principles of theLCCs include integrated servicesacross providers; child-centered,strength-based services; family-drivenservice planning; culturally compe-tent services; flexible services close tohome; integration of natural commu-nity supports; and community own-ership. The LCCs meet monthly, andare responsible for assessing theirfamilies' service needs, identifyingsystem barriers that impede effectiveservice delivery, reaching out to fami-lies and local community organiza-tions, advocating for system changes,and managing the case review. TheLCCs do not provide direct clinicalservices. Each LCC has at least onemulti-agency Case Review Team thatreviews cases to assist the family inidentifying and coordinating neededservices within the community's sys-tem of care.

Through advocacy and guidance,the LCCs' Family Service Coordina-tors assist the family and/or thefamily's case manager in linking to theidentified services and navigating thesystem of care. Services availablethrough the LCC case review processinclude therapeutic recreation, re-spite, in-home behavior therapy andparent training, day treatment, thera-peutic foster care and wraparoundservices (non-traditional supports forthe child/youth and family). Servicesare provided by community agencies,many of whom are participants in theLCCS.

FAMILY INVOLVEMENTThe involvement of family mem-

bers in making decisions about appro-priate services for their children andtheir own home environment is para-mount to the activities of our Depart-ment, and the work within the LocalCoordinating Councils. We recognize

VOLUME 12, NO.1 20

FOCiPOINT

that parents do have the best knowl-edge of their children and 'that theyare the primary caregivers, often pro-viding the day-to-day emotional andenvironmental support for their chil-dren. Without their guidance andknowledge, the services may not bethe most appropriate to meet the in-dividualized and unique needs of eachchild and family.

In 1994, Rhode Island received afederal $15.8-million Services Initia-tive Grant from the Center for Men-tal Health Services, largely as a resultof the degree of significance our stateplaces on family inclusion in deter-mining appropriate services, and increating a comfortable environmentof respect for parents as meaningfulpartners. The Services InitiativeGrant, which we call Project REACHRhode Island, authorizes funding toimprove service capacity, and to re-search the development and imple-mentation of program needs that weredefined with family and provider in-volvement in the grant application.These funds are targeted to plan andimplement non-residential and com-munity-based integrated servicesstatewide. The five project goals areto:O augment existing services;o develop new services when

indicated;O monitor and evaluate the system

of care;o assure diverse participation; ando strengthen the existing inter-

agency framework.Parents of children with serious

emotional/behavioral challenges arestrong advocates and have a tremen-dous ability to argue with passion andtenacity for the public policy strategythat they feel most reflects theirneeds. One primary example of thisforce of energy and commitment in-volves legislation that was enacted lastyear relating to proceedings withinour Family Court under "commit-ment of voluntary placements." Thislegislative proposal was introduced tothe General Assembly in February1996 to clarify and correct an exist-ing law that had created an untenableposition for the Department of Chil-

dren, Youth and Families to requirethat families relinquish custody oftheir children in order to receive nec-essary out-of-home placement ser-vices. Our Department was sensitiveto the tension created by this prac-tice, and was receptive to suggestionsand recommendations from familiesto reexamine the existing statute fora more family-focused amendmentto relieve the tension and allow par-ents to retain custody rights fortheir children, and still seek neces-sary treatment assistance throughour Department.

A special task force was formed,and met on a monthly basis for a year,throughout most of 1995, developingthe legislative amendment to be in-troduced as House Bill 8337 in the1996 session of the General Assem-bly This task force was comprised ofparents, advocates, legislators, repre-sentatives from the Governor's PolicyOffice, a representative of the federalRegional Office of the Administrationfor Children and Families, represen-tatives from our legal staff andChildren's Mental Health and Educa-tion. The legislation was well receivedand enacted into law upon passage.The work involved in developing thislegislative amendment demonstratesthe value and quality of family in-volvement in making sure that pub-lic policy does not miss the goal, buttruly represents the best interests ofchildren and families.

CHILDREN'S MENTAL HEALTHADVISORY COMMITTEE

The Children's Mental Health Ad-visory Committee (CMHAC) was es-tablished six years ago through devel-opment of the Local CoordinatingCouncil networks in partnership withthe Parent Support Network. It rep-resents the local chairpersons of theLCCS, family service coordinators,parent advocates, and representativesof other provider agencies, as well asrepresentatives from Children's Men-tal Health and Education. TheCMHAC has two co-chairs, elected bythe committee. One co-chair is a fam-ily member, and also director of theParent Support Network; the other

co-chair is a local agency representa-tive. This committee serves to advisethe Department of Children, Youthand Families on issues and concernsfor services, in an effort to continu-ously improve the quality and capac-ity of services for children and fami-lies. The legislative amendmentenacted last year is an example of thecommittee's work with the Depart-ment to effect change in public policy.The LCCs have also increased thenumber of case review teams, andenhanced service capacity withintheir communities, as a result of theProject REACH funds, expandingawareness, appreciation for servicecoordination and family involvement.

INTEGRATED MANAGEDSYSTEM OF CARE

Rhode Island's Department ofChildren, Youth and Families is con-cerned, as are other states, about theimplications of managed care on theservice needs for families with chil-dren who have serious emotional and/or behavioral challenges. Our Depart-ment is seeking to develop an inte-grated managed system of care, as op-posed to a managed care system. Wehave the unique circumstance of be-ing a unified state agency, and havingthe ability to develop a continuum ofservice needs that spans our popula-tion which includes families who donot have a legal status with our De-partment, to families who are receiv-ing services through our child wel-fare programs, and on through tochildren and youth who are involvedin our juvenile correction system.

Throughout much of last year, ourDepartment worked on developing adesign for an integrated managed sys-tem of care with a small committeecomprised of representatives from theParent Support Network, the Coun-cil of Community Mental Health Cen-ters, the Children's Policy Coalition,the Consortium of Residential Provid-ers, a representative chair of theLCCs, a community advocate, a rep-resentative of special education, andrepresentatives within DCYF's Finan-cial Management, and Children'sMental Health and Education. This

®211FALL 199g

FOCIAINT

committee identified the values andprinciples for a system of care,which envisioned further develop-ment of community and family part-nerships for shared responsibility indetermining the levels of care andthe utilization of a comprehensivearray of services.

As a result of the work in this com-mittee, and particularly the familyinvolvement, the Department issueda Request for Letters of Interest inSeptember 1996 to solicit communityresponses, which would further ad-vise DCYF as to the communities'capacity, creativity and commitmentto form a collaboration that would beable to develop a system of care tomeet the standards represented in thevalues and principles. The responsesto the Letters of Interest have beenan important barometer in helpingthe Department to work more dili-gently on the development of a Re-

quest for Proposals, which will re-sult in a practical system design rep-resentative of the needs of the popu-lations receiving services throughour Department.

MAINTAININGTHE INITIATIVE

Funding for children's mentalhealth services comes from multiplesources, including state agencies,Medicaid, private insurers, and fed-eral grant dollars. A question whichcontinues to be reviewed and dis-cussed at all levels is what will hap-pen to the enhanced community-based services funded by federal grantdollars once the grant funds havebeen exhausted, which is currentlyprojected to be February 2000.

The Department of Children,Youth and Families, with family in-volvement, is presently beginning towork in a dynamic partnership with

the Department of Human Services(DHS), which has sole authority foradministering the state Medicaidplan. Our intentions are to reviewthose services being provided whichhave proven to be effective for thechildren and families, and then workjointly with DHS to maximize ourpurchasing ability, perhaps blendfunds, in order to continue, and en-hance, an integrated service networkfor children and families in RhodeIsland. Our goal is to provide servicesthat are meaningful to children andfamilies, and finally arrive at ourdream of a seamless system of careso families do not need to be so con-fused and frustrated about where toreceive services.

KATHRYN B. NICODEMUS, LICSW, Chief,Children's Mental Health and Education,Rhode Island Department of Children,Youth and Families, (401) 457-4514.

FAMILY MEMBER I

n Vermont we ask an awful lot of_.,..some of our family members whohave children with emotional/behav-ioral disabilities. We ask them to over-come potentially consuming emo-tions such as sorrow, grief, frustration,and rage. We ask them to work withus even when they are facing poten-tial exhaustion, intermittent crises,and all the stresses of a regular life inthis culture. Some people might saywe ask too much. Perhaps we do, butwe have no real choice. Our systemof care is far from perfect, and it willnever develop sufficiently withouttheir help.

Our system of care involves manycomponents of necessary develop-ment. In this article we will glancebriefly at four basic components: leg-islative advocacy, service planningand evaluation, case reviews andtraining, and government councils.

LEGISLATIVE ADVOCACYThe basis for any enduring system

of care lies in supportive laws andtheir regulations. During the past

NVOLVEMENT IN POLICYMAKING IN VERMONT

three years Vermont has passed sev-eral major legislative initiatives thathave set a new national standard inthe fields of health care and behav-ioral health care reform. Family mem-bers have played a key role in thispolitical process.

This past June, for example, aftera challenging but highly successfullegislative battle, Vermont's Governor,Howard Dean, signed into law thenation's most comprehensive and ex-pansive mental health and substanceabuse parity bill. The Vermont lawmandates the end of discriminatorypractices in the construction of healthcare benefits in the commercial mar-

ket; it creates real parity between thetreatment of the brain and the body.

With less fanfare three years ago,Vermont enacted a major piece ofhealth care reform legislation whenit approved the Vermont MentalHealth Utilization Review law. Thisbill, one of the most aggressive in thecountry, establishes a clear regulatorymandate for all mental health man-aged care companies doing businessin the state while also creating astrong consumer protection grievanceprocess.

"If we utilized a secret weapon inVermont," said Ken Libertoff, Direc-tor of the Vermont Association forMental Health and architect of thesetwo legislative initiatives, "it is therealization that parents, family mem-bers, consumers, and concerned citi-zens make the best and most compel-ling advocates at the State House."

The Vermont Parity bill came un-der consideration in both the Houseand then the Senate this past winterand spring. Groups such as the Ver-mont Alliance for the Mentally Ill, the

VOLUME 12, 110.1 22

FOC OINT

Vermont Federation of Families forChildren's Mental Health, and Ver-mont Psychiatric Survivors werehighly active participants in two pub-lic hearings as well as in testimonybefore key committees. Reflecting onthe winning battle, RepresentativePaul Poirier, chairperson of the HouseHealth and Welfare Committee, statedthat this testimony was a crucial fac-tor in moving the bill to passage.

The Vermont Mental Health Uti-lization Review bill was in serioustrouble three years ago until themother of a severely troubled teen-age daughter took the witness stand.With clarity of detail and the powerof emotion, this parent, in one hourof riveting testimony based on herfamily's experiences, refuted and re-jected several days of argumentsabout theory and probabilities bymanaged care companies against theregulatory bill. The bill not onlymoved out of the committee, but itmade its way to the Governor's deskfor final approval and was signedinto law.

SERVICE PLANNING ANDEVALUATION

Once we have the authority andfunding to improve the system of care,we must plan services and supportsto implement such improvements,and then evaluate the results to as-sure we are moving in the right di-rection. One recent example of fam-ily involvement in such a process isour Families First initiative.

Since its beginnings in 1993, theFamilies First initiative has involvedparents as full partners with profes-sionals in each phase of its process,from initial service planning andimplementation to evaluation, feed-back, and services modification. Thisinitiative was designed to strengthenand preserve families of children ex-periencing serious emotional and be-havioral problems. It did so by pro-viding access to mental health andother community-based services tofamilies in crisis, in a child-centered,family-focused manner. Initially pri-ority services were planned andimplemented by local governance

boards in each of the state's 12 re-gions. As participants of these re-gional boards, family members pro-vided critical, practical insights aboutgaps and needs in the service systemand helped devise family-friendlymethods to fill them. In this samerole, they also helped to develop de-sired outcomes and to select specificindicators to monitor progress to-ward them.

From the time children and fami-lies began receiving new services, thedata collection phase of evaluationwas put in place. Family members andother caregivers became the corner-stone of this process. The "data" origi-nated with the words of each youthand parent, with the telling of theirstories to an intake worker in a localagency. Courageously, 529 parentsand caregivers and 302 youth havegiven time and thought to share theirlives and their ideas to help improvethe system. The importance of this isunderscored by Howard Stevenson,"The lion's story will never be told ifthe hunter is the one who tells thestory" Youth and parents have alsoassumed the role of columnist for theinitiative's newsletter, offering insightabout ways of navigating within thesystem of care.

To ensure a family-focused evalu-ation, we hired a parent as an inter-viewer on the state evaluation team.This parent had spent years learningto advocate for her own childrenwithin the service system. Not onlydid she provide a greater than 85%interview completion rate ofcaregivers who had no phones andlived in hard-to-find rural homes, butshe also tirelessly kept us groundedin the family perspective. She hassince moved on to create and becomethe Director of Family TIES, an orga-nization which provides training, in-formation, empowerment and sup-port to families. Another parent hasrecently been hired as a member ofthe research team.

As more information was com-piled about individual youth and theirfamilies over time, feedback of pre-liminary outcomes was provided spe-cific to each region. A parent group

was formed to examine the data anddesign a format in which to presentthis information to each family whoparticipated in the evaluation. Thisgroup continues to contribute consul-tation to the team.

The ongoing presence and voiceof family members in all aspects ofFamilies First maintains the integrityof the communication cycle of learn-ing from families about what theyneed and what helps in their lives, andreturning this information to regionsto modify services. As one parent af-firmed, "For me, the main questionwill always be, `Will this activity helpmy child?"

CASE REVIEWS & TRAININGWhile it is vital to plan services

and evaluate the results in order toimprove the future system for every-one, it is equally Vital to pay atten-tion to individual, real children andfamilies while we are still strugglingin our existing system.

Part of Vermont's system for youthwith emotional/behavioral disabilitiesand their families was put in place in1988 with the passage of Act 264. Itcreated our system of care, a state-wide network of Local InteragencyTeams, one State Interagency Team,and a Governor-appointed AdvisoryBoard. We have a Family Representa-tive on each of our Local InteragencyTeams and on our State InteragencyTeam. One-third of our AdvisoryBoard consists of Family Representa-tives. All of them are paid for their

.. -time.

A basic purpose of the Local In-teragency Teams is to assure that nochild or adolescent with a severe emo-tional disturbance "falls through thecracks" while we are building our sys-tem of care. Any family member orservice provider who feels that theneeds of a specific child are not beingmet through the normal operation ofthe system has the right (assumingparental permission) to turn to theLocal Interagency Team for technicalassistance. Typically this involves ad-vice on what types of services or sup-ports might be helpful, or on how tofind funding if a child is not eligible

c..11 .,;; 23FM 1991

FOCi4OINT

through the usual channels. Occa-sionally the child's interagency treat-ment team may not be able to agreeon a coordinated service plan. In suchcases, the team may ask for help towork towards consensus.

In all of these situations, the pointof view of the family is vital to suc-cess. We urge families to attend thesemeetings of their region's Local Inter-agency Team, but realize that it canbe intimidating to walk into a roomfull of professionals knowing only oneor two of them in advance. Therefore,we offer the opportunity to talk withthe team's Family Representative be-fore the meeting. This can be in per-son or by phone. We hope to explainthe purpose of the meeting, give someguidelines about what the team canand cannot do, set up a feeling ofsafety within the meeting, and offerthe element of support from anotherfamily member. And, if the familydoes not attend the meeting or if thechild is without a family at the time,the Family Representative acts as the"family conscience" of the group, avoice reminding professionals thatchildren are entitled to a caring fam-ily and adequate supports and ser-vices. It makes a difference to a sit-ting team of professionals to knowthat the push for action, especiallyaction which challenges current sys-tem abilities, is coming from a teammember who sees both sides: the limi-tations set by law, budgets, and pub-lic policy on the providers, and theexigencies of the child's and family'ssituation.

Walking into any major bureau-cracy (e.g., education, mental health,child welfare, physical health) for thefirst time is overwhelming. Trying toget something specific out of it is evenharder. Our children and familieshave to manage these tasks in severalmajor bureaucracies at once. Ourfamilies have asked for several yearsfor training in system organization,functioning, and advocacy to help getthem on the same footing as the pro-fessionals who spend their life learn-ing the in's and out's of their systems.We have been working to developsuch a training curriculum with the

Vermont Federation of Families, theCenter for Community Change atTrinity College, and the UniversityAffiliated Program at the Universityof Vermont. It is nearly completed andthe Federation has already offered theexisting components to numerousfamilies in several regions around thestate. Family members and profes-sionals alike seem very pleased withthe results.

GOVERNMENT ADVISORYCOUNCILS

"Is there a polite way to do a revo-lution?" asks the button on myfriend's book bag. We're trying.

Vermont over time has developedmany government advisory councilsand boards with family member in-volvement. But Vermont is small, andthe energy of advocates is spread thin.We decided that families of childrenwith different disabilities should notbe pitted against one another to "fightover the bones" of insufficient re-sources in a state with a small eco-nomic base. The Vermont Council forFamilies of Children with SignificantDisabilities was born from coalitionone year ago. We are committed toworking together for whatever eachneeds to succeed. We have alsostrengthened common ground be-tween families and individuals withdisabilities. These connections en-abled us to attach parts of our FamilySupport bill to a popular bill for long-term care for individuals with disabili-ties, riding its coattails to victory andestablishment of a state council.

This council's composition andduties reflect national legislation inPL 103-382, the Families of Childrenwith Disabilities Support Act of 1994.The majority are family members ofchildren with disabilities under the .

age of 18. Currently the position ofchairperson, required to be a familymember, is shared between two fa-thers: one a veteran of advocacy infamily support, and one newer to thefield. This mirrors the council's com-position, which includes long-timeadvocates mentoring younger fami-lies, who bring the renewing energyneeded to move forward. Other mem-

bers of the council are decision-mak-ers from relevant state departments,with particularly good attendancefrom mental health, developmentalservices, and special education.

Major issues on the council's plateinclude working to:

O restructure respite programs toincrease coordination, flexibility,availability, and sufficiency

o ensure a plentiful supply oftrained respite workers

0 clarify issues of taxation and un-employment benefits for respiteworkers and families

o ensure a trained, family-centeredservice delivery system with multiplepoints of entry to the system, eachpoint accessing the whole system

o create a single Medicaid pediat-ric waiver across disabilities

o require community-based orga-nizations to include in contracts clearfamily-centered goals and outcomesupon which future funding will bebased

o develop clear, consistent defini-tions across human services of: "ad-ministrative costs," "costs that aredirect services to families," and "coststhat are services to children with dis-abilities"

° increase opportunities for alter-nate dispute resolution procedures

o create a safety net for childrenlosing benefits under the new federalwelfare reform act, including in-creased funding for EPSDT (Early andPeriodic Screening, Diagnosis, andTreatment) services

0 recommend ways to ease transi-tions to adult life for people with dis-abilities

o increase state funding of specialeducation

o promote public awareness ofchallenges faced by children with dis-abilities and their families

CONCLUSIONSo in Vermont we may be guilty

of asking an awful lot of some of ourfamily members. Fortunately, theyhave a tremendous amount to give.In spite of everything life throws atour families, many of them find theenergy, concern, compassion, and

VOLUME 12. NO.1

FOCAINT

hope to commit to helping othersindividually and to tackling systemchange. Their presence alone re-minds all of us of the price of fail-ure; some have children who havecommitted suicide or spent time injail. Their presence also reminds usof the possibility of success; somehave children who are attendinghigh school or college, have foundjobs, and are engaged in their com-munity. But presence alone is inad-equa te. We need their wisdomgained from experience, their cre-ative problem solving ability, andtheir passionate drive for im-provement.

KEN LIBERTOFF, Executive Director, Ver-mont Association of Mental Health, PO.Box 165, Montpelier, Vermont 05602,802-223-6263.

ALICE MAYNARD, Interagency TeamsAdministrator, Department of Devel-opmental and Mental Health Services,103 South Main Street, Waterbury,Vermont 05676, 802-241-2609,e-mail:[email protected].

NANCY PANDINA, Evaluator, FamiliesFirst, Department of Developmentaland Mental Health Services,103 South Main Street, Waterbury,Vermont 05676, 802-241-2838,[email protected].

From left: Nancy Pandina, Alice Maynardand Susan Yuan

SUSAN YUAN, Lecture); University Affili-ated Program, 499-C Waterman Build-ing, University of Vermont, Burlington,Vermont 05405, 802-656-4031,[email protected].

FAMILY-PROFESSIONALA summary of the Nationa

We are seeking a new way ofthinking about the relation-

ship between families and service pro-viders at both the individual familyand the policy level. This philosophyis one that emphasizes the interde-pendence of us all and the need toengage as allies in the struggle to im-prove the lives of our children. It is aphilosophy that recognizes the impor-tance of sharing power. Family mem-bers rarely share the same access topower as do providers or policy staff.This leads to feelings of fear, distrust,anger and competitiveness.

For a variety of reasons-historic,cultural, social, economic-our servicesystems have been constructed so thatprofessionals are perceived as havingpower over family members alongwith their children as users of theirservices. Professionals have more ac-cess to such resources as politicalpower, purchasing power, informa-tion, educational skills, and the ben-efits of social status. Family membersoften feel depleted of financial, emo-tional, political, and informationalresources. Consequently, they expe-rience very little control over theirlives, or the lives of their children,when they seek help in the care anddevelopment of their children withserious behavioral, emotional, and

RELATIONSHIPS: MOVING FORWARD TOGETHERI Peer Technical Assistance Network's 1998 publication

POWER P o WM Vffil

Self Interest Community Interest

Winning Cooperation

Controlled Access to Valued Resources Shared Access to Valued Resources

Hierarchical Thinking Structure Non-Hierarchical Thinking Structure

Controlled Participation Open Participation

Preparation for the empowerment process: Identifying competencies and developingshills. Bari; D. & Cochran, M. (1991).

cognitive difficulties.The ideal situation in the relation-

ship between families and profession-als is one where no one group haspower over the other. Power resideswithin the system, with both groupsworking together to enhance theireffectiveness.

When professionals begin to rec-ognize what family members alreadyknow-that families are critical partici-pants in the ecosystem in which chil-dren grow-the challenge is reframed.It no longer makes sense to thinkabout how to bring families into anarena to which they already belong.Once everyone fully recognizes andappreciates the membership they al-ready have, the task becomes one ofhow to develop and maintain authen-

tic connections between all membersof the system. In a systems viewwhere all life is seen as connectedall members, groups, and organiza-tions of a community areinterdependent. "The success of thewhole community depends on thesuccess of its individual members,while the success of each memberdepends on the success of the com-munity as a whole."'

SYSTEMS THEORYIn systemic or ecological thinking,

networks are key. Power comes fromanywhere in the system and is con-ceived of as influence of others. Con-nectedness and relationships amongthe parts of a system are vital to itssurvival. The essential properties of a

FAR 1998

FOCAINT

system arise from interactions andrelationships among the parts. Mem-bers of the system collaborate, coop-erating to achieve their ends. Thereare no hierarchies of systems, justnetworks nesting within other net-works in a web.

The basic principles, outlined byboth Capra and Senge, for buildingsustainable systems include interde-pendence, the cyclical flow of re-sources, partnership, flexibility, diver-sity, and-as a consequence of allthose-sustainability. These principlesapply to our work of building sustain-able systems of care for children, theirfamilies, and communities.

Interdependence. All members ofa community are interconnected in avast and intricate network of relation-ships from which they derive theiressential properties. Therefore, theyare mutually dependent on one an-other. The success of the whole com-munity is dependent on the successof each member and the success ofeach member depends on the suc-cess of the whole. Nourishing thecommunity means nourishing theserelationships.

The Cyclical Flow of Resourcesvia Feedback Loops. The effects of ac-tions, decisions, and behaviors in asystem are not linear cause-effectchains, but rather ripple out in everwidening circles in the communityActions reinforce or counteract eachother through patterns of change thatrecur again and again. There is a re-ciprocal flow of influence so that ev-ery influence is both cause and effect.Nothing occurs in only one direction.As a result, everyone shares respon-sibility for problems generated by asystem.

Partnerships. Partnerships arethe tendency to associate, establishlinks, and cooperate. They are essen-tial for sustaining a system. Partner-ship arrangements ensure democ-racy and personal empowermentbecause each member of the com-munity plays an important role. Aspartnerships evolve, each partnerbetter understand the needs of theother. This results in both partnerslearning and changing. Cooperation

and partnership replace competitionand domination.

Flexibility. Because conditions arecontinually fluctuating, ecosystemssurvive by maintaining a readiness toadapt to changing conditions. Pro-longed stress results from rigidity, orlack of flexibility, and can destroy thesystem. Flexibility also helps a systemresolve inevitable conflicts.

Diversity. Diversity also helps asystem to be resilient because it con-sists of members with overlappingfunctions and multiple approaches toproblem solving. If a system is chal-lenged, it will have numerous optionsfor adapting, interpreting, and learning.

A community's strategies for in-volving families in operating and re-forming systems of care will be moresuccessful if they are based on theseprinciples. Rather than seeing "fami-lies" and "professionals" as isolatedsingular parts who work indepen-dently of one another, we begin to seeeach as associated parts of a larger,integrated whole. Rather than in com-petition with each other for controlof scarce resources, where if one sidegains the other loses (be it power oraccess to resources), they are interde-pendent. The values of cooperationand partnership become central tosurvival of the common good.

CHANGING BUREAUCRACIESTO INVOLVE FAMILIES.

In their zeal to balance equity,quality, visibility, and accountability,traditional bureaucracies precludeflexibility, discretion, responsiveness,and effectiveness. The changes in bu-reaucracies that must take root to sup-port a different way of working withfamilies include:

O Administrative support to moreactively involve family members;

o Programmatic and fiscal flexibil-ity to develop comprehensive serviceplans based on family needs ratherthan services available;

o Training to shift from staff-domi-nated to family-centered approaches;

o Leeway to create opportunities,provide information and training, andoffer concrete support services tofamilies;

O Time for professionals to com-municate with families and other pro-fessionals; and

o A system that makes them ac-countable, not in terms of units ofservices provided or individual activi-ties undertaken, but rather by out-comes, by how skillfully they haveengaged others in developing andimplementing successful solutions.'

CONTINUUM OFFAMILY-PROFESSIONALRELATIONSHIPS

There have been dramatic changesin the past thirteen years in the over-all practice of children's mental healthservices. The most significant changesare evident in the services with indi-vidual families and with systems' levelpolicy development. Planning hasevolved from an expert driven, pro-fessional-centered approach to family-centered, team-supported infrastruc-tures. These infrastructures develop andsupport interdependent relationshipsand interlocking services.

States and communities are, how-ever, each at their own point of de-velopment in this evolution. Somehave achieved far more progress thanothers have. We have tried to portraythe stages of development in the formof a continuum. As they begin to con-sider strategies for moving furtheralong, readers can use the continuumto determine where they are in theirown development.

The stages are not discrete. A par-ticular location may be further alongin some aspects of this work than theyare in others, but the process reflectsprogress as one moves from one stageto the next. Each state involves astronger commitment to thinking andaction. As a result, the evolving fam-ily-centered approach has a solidfoundation as it moves through thedevelopment process.(Figure 2)

Professional-Centered. T heagency works only with the child.Staff write treatment plans based onoffice interviews. Usually a singleagency, or an agency operating alone,provides services to meet identifieddeficits. Usually the involvement ofanother agency includes formal re-

VOLUME 12, NO.1 26

.LFOC OINT

quests for records or a request to at-tend a meeting. Plans are never de-veloped between agencies. The fam-ily may end up with three differentplans.

Parents are simply not included inplanning, delivering interventions, orevaluating their effectiveness. Parentsare not asked what they need to helpcare for their child. They are rarelyseen as a resource, and never as theprimary agent of twenty-four hourcare. Providers at this level view thefamily as part of the problem, if not thevery cause of it. Juvenile justice andchiid welfare programs are frequentexamples of this level of practice.

Providers make the decisions,know the "right" answers, and deter-mine treatment. They work primarilyfrom charts and other documentstransferred from provider to provider.Providers frequently become frus-trated and ineffective, perceiving fam-ily caregivers as unwilling and/or un-able to do what they are told. Theyperceive the family caregivers as per-sons who won't get it right, won't fol-low through, and won't be consistent.

Family involvement in service andpolicy planning at this level is veryrare. If there is any involvement, itdoesn't go well. Providers experiencefamilies as fickle, non-compliant,non-committed, uninformed, angry,hostile, often aggressive, definitelyresistant. Providers who attempt toplan with families who have been

PROFESSIONAL-CENTERED

Adversarialprofessional-parentalrelationship

Professional isthe expert

Parent is theproblem

served at this level of practice findthemselves defending the involve-ment to their colleagues, who say"Why do this?" Frustrated by the ex-pense of providing childcare, trans-portation, lodging, up-front stipendsto caregivers who appear ungrateful,they frequently decide that costs out-weigh any long-term benefit to theagency or to the planning process.

Family-Focused. Providers recruitfamily members as helpers and alliesin the child's treatment. The providerknows best, determines the plan ofcare, and shares it with the familymembers.

Once the family requests help atthis level, providers meet with themto scrutinize their need for services.When the need for help involves morethan one agency, many professionalsbecome involved. This creates a situ-ation where very personal problemsare examined and shared across agen-cies. Involvement in the treatmentprocess changes the family's role inthe community. They see themselvesand their providers see them as need-ing help, wanting advice, direction,and guidance for the child. By accept-ing help, family caregivers come to seethemselves as people who need to behelped, can expect to be judged asgood or bad, and need teaching andadvice.'

What they receive, however, rarelymatches their defined needs. This isespecially true when their racial, gen-

FAMILY-FOCUSED

Families are

helpers and allies

Caregiver is"one-down"

Professional is theexpert

FAMILY-ALLIED

Families are

customer

Family caregiver isan equal

Family andprofessional workcollaboratively toaddress mutuallyagreed upon goals

der, cultural, or socio-economic back-ground is different from the providercommunity. Families get discouragedand angry because the provider rec-ommendations don't really work; fam-ily members can't make them work.Yet, to get serviceseven services thatthey may not even see as very help-fulthey must follow certain rulesand wear the demeanor of a personneeding help, of a person beinghelped. They learn to act dependentand passive with their caregivers.

Families in this situation feel theyare under the scrutiny of providerswho are searching for their deficits.They feel they are being placed in thesame status as the child who needshelp. They learn to accept that theythemselves should seek therapy orenroll in parenting classes.4 They be-gin to accept the judgments of theproviders who assess how well thefamily follows the rules set out forthem-if they meet appointments, ifthey follow the reinforcement sched-ule established by the therapist, or ifthey make the child complete thehomework assigned by the teacher.These judgments are passed fromprovider to provider and are basedon the perceptions, values, and stan-dards of people who are strangersto the family's own values, culture,and beliefs.

At planning meetings, the family'sexperience, as well as the experienceof most providers, is informal. It is

FAMILY-CENTERED

Professionals are"one down" tofamilies

Parents know best

Professionals roleis to supportfamilies to helptheir child

TEAM-CENTERED

Wrap-aroundmodel

Team makes

decisions

Team includesfamily. provider,

child and others

Figure 2. Adapted from Table One: Children and YouthThe Continuum of Services in the National Peer Technical Assistance Network's1998 publication

;

1' ,-.= FAIL 1998 27

FOCAINTlimited to "input." Families may ex-perience opportunities to learn andto attend meetings, but they get frus-trated and discouraged by too muchor not enough information, by com-plex and bureaucratic mazes. Theyfind they cannot attend enough meet-ings to be effective. Work and childcommitments prohibit their real in-volvement. Furthermore, the familieswho attend such meetings are fre-quently not representative of the cus-tomer group-the actual service clientwhose issues are being considered.There has been no formalized processfor selecting or recruiting families.The families represent no voice otherthan their own at the meeting. Theyare not accountable to any largergroup of families for what they say

Family-Allied. In this situation,providers meet with family membersand invite them to join the serviceplanning process as equals. They areto become partners in determiningwhat services their child will receive.Providers and family members makedecisions together. Meetings go onforever. Collaboration is the priority.Providers from different agencies in-form families separately about whatis available and what is not, oneagency at a time.

Providers support what the fam-ily wants, what family caregivers saythey need. Yet, the family frequentlydoesn't have enough informationabout services or enough contact withother families to know what to askfor. Since they don't know what to askfor, families say that they don't needanything.

Providers listen and search for ser-vices to match family needs. The pro-vider operates in the "I have it. I knowmore. I'll get it for you" mode. Thefamily operates from the "I needwhatever you tell me I need" mode.Providers know what is best. Whenproviders and caregivers figure outwhat the need is-possibly with a par-ent support consultant who is expe-rienced with the service arraytherelationship becomes more equal.Connecting with other parents whohave secured services, who know thescore, who can make suggestions and

give advice from similar perspectives,encourages providers to focus on con-cerns and priorities of the whole fam-ily and encourages the family to re-qu es t help rather than assumehelplessness. Listening to familymembers' concerns, empathizing, andsharing common experiences, facili-tates the family's ability to expresstheir preferences. This assists them tobest meet the needs of their child andfamily. Families want professionals tobe sensitive, non-judgmental, andaccept their diversity.

When providers are very good, thefamily grows to need services, expectservices, and eventually demand ser-vices. Entitlement issues develop.Families look to these providers forinterventions, for crisis help, for emo-tional support, and friendship. Thefamily moves from independence todependence to keep the relationshipsgoing. At this level, providing emo-tional support and maintaining pro-fessional distance is a challenge tomany providers. Their training pro-grams and service supervisors cautionthem against becoming friends withtheir clients and advise them to main-tain a pro fessional distance fromthose with whom they are working.5

At the systems level, everyoneknows each other. Nice, behaved, re-spectful families are welcomed asstakeholders to provide input oncommittees. Demanding, aggressiverequests for services for specific chil-dren, high expectations for servicedelivery, and specific outcome moni-toring are banished by the culture ofthe alliances between specific provid-ers. They also don't exist betweenagencies and even between individualfamilies and their providers. Plannersinvite only families who are satisfied.Rarely are the customers of the spe-cific services addressed. Even morerarely are they representative of theminority demographics of the popu-lation actually served.

Family-Centered. With family-centered practice, families know andwant more. They ask, demand ser-vices, and engage their strengths. TheBeach Center on Families and Disabil-ity describes practice at this level as

discrete from traditional medicalmodels where the role of the healthcare professional is to look at the situ-ation and tell the family what to dofor the child. Key components of fam-ily-centered practice include:

O focusing on whole families asthe unit of attention;

O organizing assistance in accordwith the family's strengths;

0 normalizing and recognizing thetypicalness of situations rather thanemphasizing deficits; and

O structuring service delivery toensure accessibility, minimal disrup-tion of family integrity and routine.6

Team-Centered. Families selectfrom existing service systems oncethey have information about specificservices and what outcomes they canexpect from those services. Their pro-viders listen and attend to needs asthe family identifies them. Providersoffer information, services and thebenefit of their professional trainingand experience. But it is the familywho drives the plan and makes deci-sions about what is and is not work-ing. Providers may become very frus-trated in this role, as it threatens theirprofessional training. The one-downrelationship between provider andfamily devolves years of professionaltraining and experience with manyyouth.

In addition to their service provid-ers, the family caregivers may alsoaccess their own independent net-work for information and consulta-tion. State and national family orga-nizations serve to connect the familywith other families with similar needsand offer them information and sup-port through training in advocacyskills and in representing their needsto state and national decisionmakers.

At the service planning process,selected families may be loosely con-nected to other families but will beoutnumbered by the provider com-munity in number and backgroundinformation. Providers, particularly atthe state agency level, frequently rec-ognize the state family organizationand use it to recruit family participa-tion in planning and in legislativeadvocacy. Continued page 28

VOLUME 12,110.1 28

WAIF1998 BUILDING ON FAMILY STRENGTHS CONFERENCE HELD IN PORTLAND

he Research and Training Center on Family Support and

Children's Mental Health hosted itsannual conference on research andservices in support of children andtheir families, April 19-21,1998, inPortland. Participants from morethan 35 states, three provinces ofCanada and the several tribal na-tions attended.

Keynoter Robert A Naseef spokeon the topic: Special Children, Chal-lenged Parents, Helping Professionals:Building Links that Endure. Naseefbegan his presentation by askingpersons from the audience to sharetheir responses to photographs ofhimself and his son, Tariq, who hasautism. Family members, advocates,researchers and providers re-sponded with stirring accounts oftheir own reactions.

Research and Training Center Di-rector Barbara Friesen facilitated apanel of researchers who addressedhow to measure "impact" on familieswhen a child has a disability. The re-searchers were Ana Maria Brannan ofMACRO International, Atlanta: Eliza-beth M.Z. (Betsy) Farmer of CaseWestern Reserve University, Cleve-land, and Diane Yatchmenoff, Port-land State University, Oregon.

Friesen also brought togetherfamily members, researchers andothers for a roundtable at which par-ticipants shared ideas, questions,and suggestions for improving fam-ily participation in research. She wasjoined in initiating the discussion byKrista Kutash, Mary McCormack,Elizabeth Scanlon, Ann VanderStoep and Marilynn Williams.

Monday's luncheon was enliv-ened by practical and inspiring re-marks from Ken Libertoff, ExecutiveDirector of the Vermont Associationfor Mental Health. Libertoff sharedhis experiences in leading the suc-cessful legislative effort in Vermontfor mental health parity for healthinsurance.

The final conference event wasa panel of family members and me-

1998 Conference speakers includedNaseef, Phillippe Cunningham and

(from left) Barbara Huff, Keynote speaker Robert A.Ken Libertoff.

dia experts discussing "How to Getthe Word Out About FamilyStrengths." The panel chair, SusanDubuque, family member fromRichmond, introduced family advo-cates Sandra Spencer, Liz Sweet andSandra Campbell-Jackson who toldtheir stories of successfully work-ing with media in their local areas.They were joined by media expertsMaya Blackmun of The Oregonianand John Faherty of KOIN-TV(6) inPortland, who described successfulrelationships between media profes-sionals and advocates. Participantswent home with manual on how towork effectively with media. Cop-ies are available from the Researchand Training Center by callingDenise Schmit at 503-725-4175.

Throughout the conference, 15symposia, 39 paper sessions and 7special sessions were held on top-ics ranging from computers andfamilies to the language of family-centered services. Thirty poster pre-sentations added to the mix of in-formation and perspectives onfamily strengths.

Family members from 8 statesand the Navajo Nation were recog-nized as honored guests of the con-ference, attending as representativesfrom their organizations.

Co-sponsors of the 1998 confer-ence were the Federation of Familiesfor Children's Mental Health, the Na-tional Institute on Disability and Re-habilitation Research, U.S. Depart-ment of Education; and the Center forMental Health Services, SubstanceAbuse and Mental Health Services

Administration, U.S. Department ofHealth and Human Services.

The 1999 Building on FamilyStrengths Conference will be heldIn Portland from June 3-5.

NICHCYThe National Information Center for

Children and Youth with Disabilities

Access NICHCY!for a world of information

on disabilities

Call:1-800-695-0285 (V/TTY),

E-mail:[email protected]

Gopher:gopher aed.org

Web:http://www.nichcy.org

Write:P.O. Box 1492

Washington, DC 20013

Fax:202-884-8441

fAR1000 29

FOC60INT

FAMILY-P

At planning levels, words like"family-driven" permeate service dis-cussions. Power and control issuesdominate. The family organizationwhich began with a mission of advo-cacy and family supportbecomes aprovider whose mission is to meet theunmet needs families identify. Fami-lies of different racial, cultural, andsocio-economic status than their pro-viders rarely experience this level offamily-determined supports.

At this end of the continuum,services are developed to respond tofamily members' very specific needs.The family may ask to be their owncase manager, with team membersoffering them the support they willneed to effectively function in thiscapacity. The team calculates howthis will be done. If needed, theteam configures respite and atten-dant care and works with thefamily's schedules as well as thoseof the provider community.

The emphasis here is on the in-terdependence of services and thepeople who provide the services.People join the team and belong tothe team because they offer help andsupport. Everyone identifies andshares resources. The family'sstrengths are imbedded in theteams. Team members' needs areconsidered as well as those of thefamily and the members are flexibleenough to respond quickly. For ex-ample, the child's teacher says, "I amunable to provide this level of moni-toring this month." Someone on theteam-often a family member-asks,"What do you need?" Team mem-bers listen and devise supports tothe teacher.

Supportive responses are quick,expected and delivered. Interdepen-dence of the members is main-tained. Diversity is honored. Teammembers set joint service goals andtrack outcomes. They hold eachother's services accountable andshare the responsibility to shore upinformal resources with their formalinfrastructures.

ROFESSIONAL RELATIONSH

At this level, family members areencouraged and supported to be-long to their state organization andto attend state and national meet-ings. They begin to organize, to de-velop their own information infra-structure, to receive information,and to access information beforeand after meetings. Professionalsand families receive mutual supportfor good work. Families provideneeded advocacy to move the sys-tem forward, to improve policy, andto secure new money for services.At this level, there are implicit andexplicit understandings that fami-lies need providers for their servicesand value their expertise. Providersvalue families because they are theexperts on if and how well serviceswork.

We view team-centered family-professional relationships as the long-term goal towards which families andproviders should strive in their mu-tual efforts to develop services at boththe individual family andpolicymaking levels. Shared powerincreases respect and collegialityamong team members and-most im-portantly-increases team members'abilities to identify, design and deliverappropriate services to children withserious mental, emotional or behav-ioral disorders and their families.

This summary was prepared by MarilynMcManus.

AVAILABILITYThis publication in its entirety will

be available in September 1998. It isavailable through the following threeorganizations:

Federation of Families forChildren's Mental Health1021 Prince Street, 2nd FloorAlexandria, VA 22314-2971(703) 684-7710

National Resource Network forChildren and Family MentalHealth Services Washington

IPS CONTINUED

Business Group on Health777 North Capitol, NEWashington, DC 20002(202) 408-9320

National Technical AssistanceCenter for Children'sMental HealthGeorgetown UniversityChild Development Center3301 M Street NWSuite 401Washington, DC 20007-3935(202) 687-5000

END NOTES

1. Capra, E (1996). The web of life. NewYork: Anchor Books. P. 298.

2. Adams, J. & Cooper, R. (1995).Collaborations: Building partnerships.Topeka, KS: Keys for Networking, Inc.

3. Gleidman, J. & Roth, W (1980). Theunexpected minority: Handicappedchildren in America. New York:Harcourt, Brace & Jovanovich.

4. Gleidman, J. & Roth, W, supra.5. Turnbull, A. & Turnbull, R. (1990).

Families, professionals andpartnerships. New York: Merrill.

6. Family and Disability Newsletter(1997). Summer, 8(2).

REFERENCES

Adams, J., Biss, C., Burrell Mohammad,V, Meyers, J., & Slaton, E. (1998).Family-professional relationships:Moying forward together Produced bythe National Peer TechnicalAssistance Network.

Barr. D. & Cochran, M. (1991)."Preparation for the empowermentprocess: Identifying competenciesand developing skills." In M.Cochran, (Ed.). Empowerment andFamily Support. Ithaca, NY: CornellCooperative Extension.

Senge, P, Kleiner, A., Roberts, C., Ross,R., Smith, B. (1994). The fifthdiscipline fieldbook. New York:Doubleday.

Sonnenschein, P. (1984). Parents andProfessionals: An uneasy relationship.In M.L. Henniger & E.M. Nasselroad(Eds.), Working with parents ofhandicapped children. A book ofreadings for school personnel. Lanham:University Press of America.

VOLUME 12,10.1 30

rockAINT

EAT PYE: YOUTH PARTICIPATION IN POLICYMAKING

AT PYE (Entrepreneurial ActionTo Promote Youth Employment),

of Janus Youth's Willamette BridgeProgram's Business Partnerships forYouth, began with one volunteer, Gre-gory MacNaughton (now the programsupervisor), teaching street youthhow to cook in a local church kitchen.Street youth, MacNaughton com-ments "are usually given preparedfood from shelters and, since they lacka kitchen, are never given the oppor-tunity to learn to cook for themselvesand be independent." As the programbegan to develop EAT PYE woulddonate a meal to a local shelter oncea week. The one youth who regularlyattended the program at its beginningdecided that he only wanted to makepizza. Given the youth's enthusiasmfor pizza McNaughton was easilyswayed and this proved to be quitefortunate. Another local agency serv-ing street youth in Portland, Oregon,Outside In, had been buying pizza ona weekly basis from an alternatesource and overextending its budget.EAT PYE offered to provide pizzas forOutside In at half the price and thusa youth promoted venture was born!

EAT PYE has significantly grownbeyond its basic inception. Since then,EAT PYE has become a licensed res-taurant selling pizzas to other non-profit agencies and the general pub-lic. Youth employees, Amy McCollumand Chrystal MacCoone both agreethat the grant they received, in con-junction with Outside In, from Hous-ing and Urban Development (HUD)is allowing them to expand their vi-sion of reaching out to more streetyouth. This grant funds a youth/adultliaison team to promote public safetyby providing employment opportuni-ties for street youth. The fundingcame through HUD's Enterprise Com-mittee, which provides grants to ar-eas targeted as Enterprise Zones, oneof which is downtown Portland, Or-egon. EAT PYE receives approxi-mately $20,000 from this grant, butfortunately EAT PYE now makesenough profit from pizza sales to fund

two part-time youth positions, andoperates a lunch-time pizza cart infront of the church that sells pizza bythe slice.

Currently, there are two youthemployees at EAT PYE. AmyMcCollum, age 19, is the youth man-ager, and has been employed there fornine months. Chrystal MacCoone,age 17, is the head baker and has beenemployed at EAT PYE for six months.Another youth position is in the pro-cess of being filled. Chrystal and Amyboth see lots of benefits from theirinvolvement in EAT PYE. Neither oneconsiders themselves a street youthanymore, although they did whenthey were hired. Amy now lives in anapartment, and Chrystal is in transi-tional housing. According toChrystal, she has benefited by "get-ting job skills and learning how to justwork with people", as well as learn-ing to cook. Amy agreed and also em-phasized her new teamwork skills.Amy additionally talked about the so-cialization involved in working in achurch, where she has learned towatch her language and has formedrelationships with church personnel.According to Greg, Amy is passing hernew social skills on to other volun-teer youth by example. Amy relatedhow she had previously been quiet,but now was willing to talk to othersabout her opinions and experiencewith EAT PYE. Chrystal is now plan-ning on getting her GED and goingon to college.

Greg and Amy are in the processof learning how to share decision-making. Amy, as youth manager,trains new youth, and is in charge ofproduct design. Greg, who for the lasttwo years was unable to take a dayoff, now can Jeave Amy in chargewhile he takes time off. According toGreg, the amount of responsibilitydepends on the individual youth, andAmy is the first youth, so far, that hehas felt comfortable trusting with thismuch responsibility. This responsibil-ity extends to the community as well.Both Greg and Amy serve on the Pub-

Amy and Chrystal serve as an important

liaison to street youth wanting to become in-

volved in EAT PYE or trying to change their lives.

lic Safety Committee of the Down-town Retail Council. In this capacity,they are able to bring the story ofstreet youth (as well as the story oftheir business), to local retailers. Amyand Chrystal are also being asked fre-quently about job openings by streetyouth. However, Chrystal has foundthat now that she is employed she isno longer accepted by the street youthas one of their own. Still, Amy andChrystal serve as an important liai-son to street youth wanting to becomeinvolved in EAT PYE or trying tochange their lives.

FUTURE VISIONGreg, Chrystal, and Amy all envi-

sion growth in the near future for EATPYE. They would like to see more-youth involved in the program, andmore funding to support new youthpositions. Also, they would like to seethe EAT PYE model replicated inother communities. This could beeasily accomplished since mostchurches have kitchens, and the pro-gram runs on a very small budget.Both Amy and Chrystal would like tohave EAT PYE operate a store so thatthey can get more experience dealingwith customers, as opposed to beinga delivery business. The pizza cart isa start in this direction. Additionally,all three see the pizza cart as a way toreach out to the homeless, and planto sell vouchers for free pizza slicesthat agencies can give to their clientsand that the public can give to home-less people. Amy also intends to havea resource guide and pen available atthe stand so that she can help peoplein need to find resources.

This article was prepared incollaboration with Amy McCollum,Chrystal MacCoone, and GregoryMacNaughton of EAT PYE Pizza andFocal Point Editors Kelly Blankenshipand Elizabeth Caplan.

31fAR 1998

FAREWELL, MARILYN!With a mixture of regret andcongratulations, we said good-bye to Marilyn McManus, wholeft the Research and TrainingCenter in January, 1998. Shewas a part of our staff for 12years. Marilyn also served as theexcellent and eagle-eye editorfor Focal Point. She is nowworking in the area of perma-nency planning in the childwelfare system, which supports

her long-term goal of developing greater expertise andcapacity to serve in the field of adoption.

Marilyn first worked with the Research and TrainingCenter as an M.S.W. student on the "Youth in Transition"project. Later, she was hired as the manager of the Re-source Service which subsequently became the Center'sNational Clearinghouse.

An attorney as well as a social worker, Marilyn is es-pecially interested in policy issues and she provided on-going leadership around the issue of parents relinquish-ing custody to obtain servicesboth keeping a focus onnational developments and working as part of a team toget the custody laws changed in Oregon. Most recently,Marilyn served as the Project Manager for a national studyof polices that mandate family participation

We are grateful for all that Marilyn contributed andfor her persistent advocacy to improve services for chil-dren with emotional disorders and their families.

Please join us in applauding Marilyn's many accom-plishments; thanking her for her hard work on Focal Point;saying good-bye to a good friend; and in wishing her allthe best in her new career.

Marilyn McManus(right) with her family

TRAINING INSTITUTESORLANDO, FLORIDA, JUNE 13-17, 1998

"Developing Local Systems of Carein a Managed Care Environment"

Several researchers from the Research and Training Cen-ter attended the 1998 Training Institutes organized bythe Georgetown National Technical Assistance Center forChildren's Mental Health. Since 1986, the Georgetowncenter has offered intensive Training Institutes to sup-port communities as they develop systems of care forchildren and their families.

The impact of managed care on children's mentalhealth services was one of the central themes of the 1998Institutes. General sessions addressed emerging trends inmanaged care, as well as the compatibility of systems ofcare and managed care. Additionally, four young adults pro-vided attendees of the Institutes with their own insights andperspectives on living with mental health challenges.

The next Training Institutes will be held in New Or-leans, Louisiana, from June 9 to June 13, 2000.

CHANGES IN SPECIAL EDUCATION LAW

In 1997, several changes were made in the Individualswith Disabilities Education Act (IDEA). Some new re-quirements of the 1997 IDEA are:

O Individual Education Plans must include positiveways to address problems and include a students'strengths, not only their weaknesses.

0 Students receiving special education must be taughtusing the same curriculum as other students, with onlynecessary adaptations.

O Parent permission must be given before any testingof their child, whereas before parent permission was onlynecessary prior to the first evaluation.

O Schools are required to include parents in all dis-cussions about placement of their child.

O Transition planning must now be included in theIEP for all students age 14 and older. Previously, the agehad been 16 years and older.

O The school system is now required to provide free,appropriate public education to students who have beensuspended for more than 10 days or who have been expelled.

NEW PUBLICATION ON IDEAThe Bazelon Center for Mental Health Law recently pub-lished A New IDEA: A Parent's Guide to the Changes in Spe-cial Education Law for Children with Disabilities.

This publication provides a thorough explanation ofIDEA 1997, parents' and students' rights as well as theprocess for disagreeing with the school's decisions. A re-source list is also included in the publication. For moreinformation on this publication, please contact theBazelon Center at (202) 467-5730, 1101 15th Street NW,Suite, 1212, Washington, DC 20005. The Parent's Guidecan also be accessed over the Internet at www.bazelon.org/idea.pdf. It is available in English and in Spanish.

STAFF TRANSITIONSFarewell to: Bev Stephens who served two and half yearsas Family Resource Coordinator for the National Clear-inghouse on Family Support and Children's Mental Health.Combining her own expertise as a family member withher counseling skills, she served countless families witha high degree of quality and compassion. We wish hersucess in her travel business, Blue Earth Exploration.

Anne Greenhoe, steadfast assistant for the Researchand Training Center, will be missed. She left the Centerto pursue graduate studies in theology.

Welcome: Janet Walker, Increasing Multicultural Par-ent Involvement Project, Jennifer Simpson, PromisingPractices in Family Provider Collaboration, and SusanAlmquist, support staff.

Congratulations: MT Longley! M.J. recently receivedher doctorate in Education after completing her disserta-tion Promoting Partnerships with Families: A DescriptiveStudy of the Development, Implementation, and Evaluationof a Teacher Education Curriculum.

110111M1 11, NO.1

PUBLICATIONS

AN INTRODUCTION TO CULTURAL COMPETENCE PRINCIPLES AND ELEMENTS: AN

ANNOTATED BIBLIOGRAPHY. 1995. Describes articles & boohs that exemplifyaspects of the CASSP cultural competence model. $6.50

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

RAPHY. 1990. $5.00.

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

ILLNESS OR DISABILITY. 1992. Proposes comprehensive model of familycaregiving based on literature review Causal antecedents, mediatingprocesses and adaptational outcomes of family coping considered. $5.50.

O NEW! BUILDING ON FAMILY STRENGTHS: RESEARCH, ADVOCACY, AND PART-

NERSHIP IN SUPPORT OF CHILDREN AND THEIR FAMILIES. 1994 CONFERENCE PROCEED-

INGS. Transcripts of plenaries including keynoter Lee Guthind,Cleopatra Caldwell, Henry Levin and summaires of paper and panelpresentations. $8.00.

O NEW! BUILDING ON FAMILY STRENGTHS: RESEARCH AND PROGRAMS IN SUP-

PORT OF CHILDREN AND THEIR FAMILIES. 1995 CONFERENCE PROCEEDINGS. Tran-scripts of plenaries including keynoter Karl Dennis, Peter Jensen, VelvaSpriggs &Janice Hutchinson and summaries of paper and panel presen-tations. $8.00.

CHANGING ROLES, CHANGING RELATIONSHIPS: PARENT-PROFESSIONAL COL-

LABORATION ON BEHALF OF CHILDREN WITH EMOTIONAL DISABILITIES. 1989. Ex-amines barriers to collaboration, elements of successful collaboration,strategies for parents and professionals. $4.50.

O COLLABORATION BETWEEN PROFESSIONALS & FAMILIES OF CHILDREN WITH

SERIOUS EMOTIONAL DISORDERS. ANNOTATED BIBLIOGRAPHY. 1992. $6.00.

O COLLABORATION IN INTERPROFESSIONAL PRACTICE AND TRAINING: AN ANNO-

TATED BIBLIOGRAPHY. 1994. Addresses interprofessional, interagency andfamily-professional collaboration. Includes methods of interprofessionalcollaboration, training for collaboration, and interprofessional programand training examples. $7.00.

O CULTURAL COMPETENCE SELF-ASSESSMENT QUESTIONNAIRE: A MANUAL FOR

USERS. 1995. Instrument to assist chile-& family-serving agencies assesscross-cultural strengths & weaknesses. $8.00

DEVELOPING AND MAINTAINING MUTUAL AID GROUPS FOR PARENTS & OTHER

FAMILY MEMBERS:AN ANNOTATED BIBLIOGRAPHY. 1990. $7.50.

O 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. 1993. Describes and evaluates the development of statewide parentorganizations in 15 states. $8.50.

O FAMILY CAREGIVING FOR CHILDREN WITH A SERIOUS EMOTIONAL DISABILITY.

1993. Summarizes a family caregiving model employed in survey offamilies with children with emotional disabilities. Includes review, ques-tionnaire, data collection and analysis procedures and findings. $8.00.

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

ACTION PROJECT. 1995. Outcomes of focus group life history interviews; fivecase studies of involvement in policy-making processess; results of surveydata; implications for family members and policy-makers. $10.25.

FAMILY/PROFESSIONAL COLLABORATION:THE PERSPECTIVE OF THOSE WHO HAVE

TRIED. 1994. Describes curriculum's strengths and limitations, effect oftraining on practice, barriers to collaboration. $7.50

FAMILY RESEARCH & DEMONSTRATION SYMPOSIUM REPORT. 1993. Summa-rizes recommendations from 1992 meeting for developing family re-

search and demonstration agenda in areas of parent-professional col-laboration, training systems, family support, advocacy, multiculturalcompetence, and financing. $7.00.

FAMILY SUPPORT AND DISABILITIES: AN ANNOTATED BIBLIOGRAPHY. 1995.

Family member relationships with support persons, service system forfamilies, descriptions of specific family support programs. $6.50.

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

EMOTIONAL HANDICAPS. 1994. Glossary excerpted from Taking Charge.Approximately 150 acronyms, laws, words, phrases explained. $3.00.

INTERPROFESSIONAL EDUCATION FOR FAMILY-CENTERED SERVICES:A SURVEY OF

INTERPROFESSIONAL/INTERDISCIPLINARY TRAINING PROGRAMS. 1995. Planning,implementation, content, administration, evaluation of family-centeredtraining programs for professionals. $9.00.

13 ISSUES IN CULTURALLY COMPETENT SERVICE DELIVERY:AN ANNOTATED BIBLIOG-

RAPHY. 1990. $5.00.

MAKING THE SYSTEM WORK:AN ADVOCACY WORKSHOP FOR PARENTS. 1987.

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

O NATIONAL DIRECTORY OF ORGANIZATIONS SERVING PARENTS OF CHILDREN AND

YOUTH WITH EMOTIONAL AND BEHAVIORAL DISORDERS, THIRD EDITION. 1993.

Includes 612 entries describing organizations that offer support, educa-tion, referral, advocacy, and other assistance to parents. $12.00.

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

DISORDERS CONFERENCE PROCEEDINGS. 1990. Development of parent organi-zations, building coalitions, family support services, access to educa-tional services, custody relinquishment, case management. $6.00.

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

DISORDERS (BOOKLET). 1991. Designed for use in educating about children'smental health issues. Single copy: $2.50. Five Copies: $7.00.

ORGANIZATIONS FOR PARENTS OF CHILDREN WHO HAVE SERIOUS EMOTIONAL

DISORDERS: REPORT OF A NATIONAL STUDY. 1991. Study of 207 organizationsfor parents of children with serious emotional disorders. $4.00.

O PARENT-PROFESSIONAL COLLABORATION CONTENT IN PROFESSIONAL EDUCA-

TION PROGRAMS:A RESEARCH REPORT. 1990. Results of nationwide survey ofprofessional programs that involve parent-professional collaboration.Includes descriptions of individual programs. $5.00.

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

1994. Describes policy-making bodies, examines advocacy skills, describesrecruitment methods, provides contacts forfurther information.$7.25.

O RESPITE CARE: A KEY INGREDIENT OF FAMILY SUPPORT. 1989 CONFERENCE

PROCEEDINGS. Starting respite programs, financing services $5.50.

O STATEWIDE PARENT ORGANIZATION DEMONSTRATION PROJECT FINAL REPORT.

1990. Evaluates the development of parent organizations in five states.$5.00.

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

FAMILY SUPPORT & SYSTEMS OF CARE. 1994. Highlights 1993 activities of 15statewide family advocacy organizations. $9.00.

O THERAPEUTIC CASE ADVOCACY TRAINERS GUIDE: A FORMAT FOR TRAINING

DIRECT SERVICE STAFF & ADMINISTRATORS. 1990. Addresses interagency col-laboration among professionals in task groups to establish comprehensivesystems of care for children and their families. $5.75.

THERAPEUTIC CASE ADVOCACY WORKERS' HANDBOOK. 1990. Companion tothe Therapeutic Case Advocacy Trainers' Guide. Explains the Therapeu-

1111.0M3114 11MM 0 DI1 ITO J11 IFCM 11111141 0011

FIE 199033

FOCAJOINT

tic Case Advocacy model, structure of task groups, group process issues,evaluations. $4.50.

WORKINGTOGETHER FOR CHILDREN:AN ANNOTATED BIBLIOGRAPHY ABOUT FAM-

ILY MEMBER PARTICIPATION IN CHILDREN'S MENTAL HEALTH POLICY-MAKING GROUPS.

1994. Ideas for enhancing family member participation and conceptualmodels regarding increasing participation. $6.25.

WORKING TOGETHER: THE PARENT/PROFESSIONAL PARTNERSHIP. 1987.Trainers' guide for a one-day workshop for a combined parent/profes-sional audien.ce. $8.50.

O A COMPLETE LIST OF OTHER PUBLICATIONS AUTHORED BY RESEARCH AND

TRAINING CENTER STAFF. Lists journal articles, book chapters, monographs.Free. Also available on the worldwide web: www.rtc.pcbc.edu/resource/puborderhtm

H IF HAWN OM

O Please send me the publications checked. $ enclosed. 10 FOCAL POINT Back Issues Order Form.

O Change my address as noted below. 0 Add me to your mailing list. 0 Take me off your mailing list.

NAME

ORGANIZATION

STREET ADDRESS

CITY/STATE/ZIP

TELEPHONE FAX

CHECKS PAYABLE TO; PORTLAND STATE UNIVERSITY. PREPAYMENT REQUIRED. Quantity Discounts Available. MAIL TO:Publications Coordinator, Research &

Training Center, Regional Research Insititute for Human Services, Portland State University, P. O. Box 751, Portland, OR 97207-0751, Phone: (503) 725-4175,

Fax: (503) 725-4180; e-Mail:[email protected] For your information: Our federal identification number is 93-6001786. Please allow 4 to 6weeks for delivery. Contact Publications Coordinator for rush shipments.

PORTLAND STATE UNIVERSITY

Research & Training Center

Regional Research Institute for Human Services

P.O. Box 751

Portland, Oregon 97207-0751

Address Correction Requested

DEVA LYNCHCOUNCIL FOR EXCEPTIONAL CHILDREN1920 ASSOCIATION DRRESTON VA 20191-1545

I1,1.111 Ind

Printed en recycled rimer

Non-Profit Org.U. S. Postage

PAIDPortland, OR

Permit No. 770

D

U.S. Department of EducationOffice of Educational Research and Improvement (0ERI)

National Library of Education (NLE)Educational Resources Information Center (ERIC)

NOTICE

REPRODUCTION BASIS

ERIC

This document is covered by a signed "Reproduction Release(Blanket) form (on file within the ERIC system), encompassing allor classes of documents from its source organization and, therefore,does not require a "Specific Document" Release form.

e( This document is Federally-funded, or carries its own permission toreproduce, or is otherwise in the public domain and, therefore, maybe reproduced by ERIC without a signed Reproduction Release form(either "Specific Document" or "Blanket").

EFF-089 (9/97)

34p. - ERIC - Education Resources Information Center Portland State Univ., OR. Regional Research...

Documents

Transcript of 34p. - ERIC - Education Resources Information Center Portland State Univ., OR. Regional Research...