DOCUMENT RESUME

ED 197 083 CE 027 614

TITLE Proceedings of the Annual Conference: RehabilitationResearch and Training Centers of the NationalInstitute of Handicapped Research. Meeting theOpportunities of the National Institute ofHandicapped Research (4th, Washington, D.C., May 5-7,1980). Special Edition.

INSTITUTION Arkansas Univ., Fayetteville. Arkansas RehabilitationResearch and Training Center.: National Inst. ofHandicapped Research (ED), Washington, D.C.

PUB DATE Sep 80NOT! 66p.: Photographs will not reproduce well.JOURNAL C/T Informer: v9 n3 Sep 1930

EDPS PRICE MF01/PC03 Plus Postage.DESCRIPTORS Developmental Disabilities: *Disabilities: Diseases:

*Federal Programs: Futures (of Society) : HearingImpairments; Injuries: *Long Range Planning: MentalDisorders: Mental Retardation: Physical Disabilities:Public Policy: *Rehabilitation: RehabilitationCenters: *Research: Research Projects: ResearchUtilization: Visual Impaii4ents: VocationalEducation

!DENT/PIERS *National Institute of Handicapped Research:*Rehabilitation Research and Training Centers

ABSTRACTKeynoted by Dr. Margaret J. Giannini, Director of the

National Institute of Handicapped Research (NIHR), these conferenceproceedings focus on present concerns and future issues facing theNIHR and researchers and trainers in the field of rehabilitation ofthe handicapped. In her address, Dr. Giannini outlines priorities forthe NIHR for the next five years, such as training personnel engagedin rehabilitation activities, expanding core research programs, andputting the results of research projects to work. In greetings fromthe U.S. Department of Education and Rehabilitation ServicesAdministration, respectively, Edwin W. Martin and Robert R. Humphreypoint out the need for researchers and trainers to work together withtheir departments to improve delivery of services to the handicapped.In another major address, Joseph Fenton details what is happening inRehabilitation Training Centers (RTCs) around the country andsuggests directions for the future. RTC input into the NIHRlong-range plan is then given in the following research area's:medical, blindness, vocational, mental retardation, mental health,and deafness: other NIHR long-range planning discussed includes thefollowing: overview of the planning process and plans; managementprojects, medical projects, dissemination and utilization,psychosocial projects, and in'ernational programs. A legislativeupdate, conference evaluation, and a list of conference participants,along with group meeting reports, are also included in this document.(KC)

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INFORMERVolume 9, No. 3September 1980

Contents

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Rehabilitation Res(.,arch and Training Centers: meeting theopportunities of the National Institute atHandicapped Research

Proceedings of theFourth Annual ConferenceRehabilitation Research and TrainingCenters of th National Institute ofHandicapped Reseorch in cc.operationwith the National Association ofRehabilitation Research andTraining Cent4rs

Washington, dCMay 5-7, 1980Hosted by The George WashingtonUniversity Medical RehabilitationResearch and Training Center

5 WelcomeDrs. Irene G. Tamagna, Harold F.Bright, and Joseph B. Moriarty

6 Keynote AddressNIHR the Next Five Years,Margaret J. Giannini, M.D.

Special GreetingsEdwin Martin, Ph.D.

Greetings from RSARobert R. Humphreys

VC Input Into the NIHR LongRange Plan

12 Medical Research Plan,John Goldschmidt, M.D. andH.L. Brammell, M.D.

15 Blindness Research Plan.Thomas S. Baldwin, Ph.D.

16 Vocational Research Plan,Vernon L. Glenn, Ed.D.

18 Mental Retardation Research Plan,Rick P. Heber, Ph.D.

20 Mental Health Research Plan,William A. Anthony, Ph.D.

22 Deafness Researcn Plan,Hilde S. Schlesinger, M.D.

23 Consumer Comments,Boyce Williams

Awards Banquet24 In Acceptance,

Honorable Jennings Randolph

26 In Acceptance,William A. Spencer, M.D.

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Proposed NIHR FederalRegulations Relating to RTCs

29 NIHR Proposed RegulationsOverview, Na!han Ed Acree

30 RTC Proposed Regulations Overview,Emily Cromar

NIHR Long Range Planning33 Overview of the Planning Process

and Plans, Dick LeClaire

34 Management Project ResearchPlan, Nathan Ed Acree

35 Medical Project Research Plan.J. Paul Thomas

36 Dissemination and Utilization Plan.Geurge kngstrom

37 Technology Research Plan,Dr. Tom Finch

38 Psychosocial Project Research Plan,Dr. Lee Coleman

40 International Program Research Plan,Dr. Martin E. McCavitt

New Directions for the RTCs42 Joseph Fenton, Ed.D.

Group Meeting Reports45 RTC Directors' Report,

Joseph B. Moriarty, Ph.D.

45 RTC Researchers' Report.Marcus J. Fuhrer, Ph.D.

46 RTC Trainers' Report,Donald W.Dew, Ed.D.

47 Advisory Council, State/FederalRepresentatives and Consumers'Report, Ralph N. Pacinelli, Ph.D.

Legislative Update49 Patria G. Forsythe50 Richard Verville52 NARRTC Business Meeting

54 NARRTC Executive CommitteeMeeting

55 NARRTC Board of GovernorsMeeting

57 Conference Highlights60 Program Planning Committee

61 Conference Participants63 4.7onference Evaluation

ISSN 0195-2368

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These proceedings were prepared by the University ofArkansus Rehabilitation Research and Training CenterIn cooperation with The George Washington UniversityResearch and Training Center.

National Institute of HandicappedResearchOf ace for Special Education and

RehcAtNilitatIve ServicesDepartment of EducationWashington, DC 20201

Edwin W. Marlin, Ph.D., AssistantSecretaq for Special Education andRehabilitative Services

Margaret J. GlannInl, M.D.Director - NIHRJoseph Fenton, Ed.D., Special Assistant

to the Director, NIHR

Executive Editor:Joseph Fenton, Ed.D.

Emily Cromar, Research and TrainingAssociate, Special Centers Program, NIHR

information Exchange Staff:Arkansas Rehabilitation R&T Center

Neal D. Little, Ed.D., Administrative EditorSusan J. Sigman, Program CoordinatorWilliam J. EdrIngton, Managing EditorDavid L Sigman, M.FA., Art DirectorJanie Love, Production

Photography by Mary C. Gunzburg andDavid L. Sigman.

INFORMER (USPS 495-010) is publishedquarterly by the Arkansas RehabilitationResearch and Training Center, Universityof Arkansas, Fayetteville, Arkansas, in co-operation with the Arkansas RehabilitationServices. Controlled circulation postage ispaid through official permit, Washington, DC.

Postmaster: Send address changes toINFORMER, Information Exchange Pro-gram, Arkansas Rehabilitation Researchand Training Center, P.O. Box 1358, Hot-Springs, Arkansas 71901.

All programs administered by the University of Arkansasare rendered on a nondiscriminatory basis withoutregard to handicap, race, creed, color, sex, or nationalorigin in compliance with the Rehabilitation Act of1973 and Title VI of the Civil Rights Act of 1964.

1,

Welcome

Irene G. Tamagna, M.D.Conference ChairpersonProject DirectorThe George Washington UniversityMedical R&T Center

I would like to welcome you to beautifulWashington, DC on this nice spring day,and to the Fourth Annual Conference ofthe Rehabilitation Research and TrainingCenters of the National Institute of Handi-capped Research and the NationalAssociation of Rehabilitation Researchand Training Centers. As you know, wehad very short notice to arrange this meet-ing, which was made possible with thehelp of our Program Planning Committee,Dr. Don Dew, our Training Director, andMrs. Pat Alexander, our Administrator.Without their special efforts, we could nothave gotten this meeting together. We dohope that you will find the hotel and meet-ing arrangements satisfactory. This hotel iswheelchair accessible, and interpreterservices will be provided throughoutthe meeting.

This is a very important meeting to all ofus. It is our first meeting under the NationalInstitute of Handicapped Research, andwe are very happy to have Dr. MargaretGiannini, Director of the Institute, with ustoday. Dr. Ed Martin, newly-designatedAssistant Secretary for Special Educationand Rehabilitative Services, will also comeand talk to us.

The RT-9 Center at The George Wash ing-ton University Is especially honored tohave been selected as the host center forthis Important meeting; therefore, I haveasked our Provost and Vice-President forAcademic Affairs, Dr. Harold Bright, tobring you greetings from The GeorgeWashington Universily.

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Dr. Harold F. BrightProvost and Vice Presidentfor Academic AffairsThe George Washington UniversityWashington, DC

It is often very difficult to say anythingoriginal when one is asked to bring "greet-ings," but I would like you to know that Ihave a very special interest In this groupbecause my wife is a paraplegic and Dr.Tamagna has been taking care of her fora long time.

You all know you are very welcome andwe are happy to have you at this meeting.I hope you enjoy your stay in Washingtonand that this meeting will be very fruitfulfor you.

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NMI

Joseph B. Moriarty, Ph.D.President, NARRTCProject DirectorWest Virginia UniversityVocational R&T Center

It Is always a great treat to see old friendsand to reestablish acquaintances. It is ofcourse good to see folks that we haveworked with in the R&T Center Program. Iwould like to take this opportunity to noteand to appreciate the fact that we con-tinue to see old friends that are part of theR&T extended family. I note here, ourAdvisory Committee people, includingconsumers on those committees. I alsonote RSA Central Office and RegionalOffice staff, and also representatives fromRegional Rehabilitation Institutes and Re-gional Continuing Educational Programs.It is good to have you continue to servewith us as part of what we conceive to bea very rich, and hopefully within NIHR, amore energetic family.

Without further ado I would like to pro-ceed with the very pleasurable task ofintroducing our keynote speaker. It is agreat honor for me to present to you Dr.Margaret Giannini, Director of the NationalInstitute of Handicapped Research.

Dr. Moriarty concluded his welcomeintroduction with an overview of Dr.Giannini's background and contributionsto rehabilitation which is summarized onthe following page.

OPPOSITE PAGE: (left to right) Irene G.Tamagna, M.D., Conference Chairperson,and Margaret J. Giannini, M.D., Director,National Institute of Handicapped Re-search, Washington, DC.

5

NIHRThe Next Five Years

Margaret J. Glannini, M.D., DirectorNational Institute of Handicapped

ResearchWashington, DC

Dr. Giannini is founder and formerdirector of the Mental Retardation Instituteof New York Medical College and a pastpresident of the American Association ofUniversity Affiliated Programs and theAmerican Association on Mental Defi-ciency. She has been actively involvedwith the National Committee on Childrenwith Handicaps of the American Academyof Pediatrics and the International Activi-ties and Prevention Committees of theAmerican Association on Mental Deficien-cy; has served as consultant to the MentalReterdation Construction Unit of theNational Institute of Health and to thePresident's Committee on Mental Retar-dation; has been an advisor on MR /DL tothe UN Department of World TechnicalCooperation; and is a me.nber of the Inter-national Health Society and past directorof its developmental disabilities program.

Dr. Giannini has headed the efforts ofnumerous state, local, and communitydevelopment organizations including theNew York State Association for RetardedChildren; State Council for DevelopmentalDisabilities; Honorary Committee of theNew York State Special Olympics; and theMental Retardation Task Force of the NewYork State Education Department. Shehas served on Governor Rockefeller'sCommittee on Children of the New YorkState Department of Mental Hygiene. Dr.Giannini is the recipient of the BronzeMedal of the American Academy of Pedi-atrics, the Enrico Fermi Education Award,the Wyeth Medical Achievement Awardand the Key to the City of Bologna, Italy.

I am really very pleased to bo heretoday and to open your fourth nationalmeeting I feel vary privileged to addressyou as the first Director of 'he Nalionalinstitute of Handicapped Research. I knowa number of you already; we have hadoccasions to speak and to get acquaint-ed, and I hope that I will get to know therest of you on a oneto-one basis withinthe very near future.

When I was asked to speak here today Ithought to myself, "What would this groupreally like to hear, and what do they wantto learn in terms of the Institute ?" What Iwould like to do initially is set ihe tone ofthis meeting and, perhaps, for the future.I think all of us today are really futurists,and when we talk about the future some-thing happenstwo types of attitudesseem to surface very quickly. On the onehand we have the optimist, who hashopes, dreams and visions and endorsesthe idea that somehow those will becomea reality with whatever efforts are required.On the other hand we have the pessimist,who looks at the world as If it Is in animminent state of collapse with a dismalfuture. The pessimist is full of despair andfeels that very little is going to happen.I happen to think that we are the futurists ofthe former type and not the latter. I wouldalso like to indicate that this is the tone ofmost of the rehabilitation professionals,interest groups and consumers aroundthe country which I have had the oppor-tunity to meet and speak with so far.

Let me tell you a little bit in terms of whatthe National Institute of HandicappedResearch foresees for the future. I am verypleased to report to you that we do havea Plan. Many of you were very activelyinvolved In that Plan, for which I publiclythank you. In fact, there was a great dealof input into the Plan: we sent out approxi-mately 3,000 letters to various professionaland interest groups for information. Manyof you probably saw the letter whichcontained some very specific questions,goals and objectives on which we neededfeedback. And we did get a great deal ofgood response from various interestgroups and professionals and also fromthe most important segmenthandi-capped consumers.

So I think that we have a very good Plan.It is not written in stone. It Is not the finalword. We certainly can after it, modify iteach year as we all participate togetherand as options and alternatives are de-cided, evaluated and set. But I think that

69

al ihis point in ilme, wilh ihe limileci amountof resources ihat we have inhouse, It is

a good Instrument and that you will bepleased when you !lee

We will not bo ready to deliver the Nonto the Congress on May 6 because of thedelay when we were in-between clf load-men? Secretaries. However, with Dr, vlartinofficially designated as Assistant Secretaryof the Department of Education the pro-cess should go more quickly,

If you have not heard already, you willbe excited to know that the President didannounce the National Council on theHandicapped last Thursday during themeeting of The President's Committee onEmployment of the Handicapped. Presi-dent Carter also stated that by ExecutiveOrder the National Institute of Handi-capped Research is the Institute where allresearch affairs concerning handicappedpersons will be housed and the focalpoint where all the decisions, researchpriorities and inter-relationships that musttake place will be consolidated. I thinkthat is a tremendous statement for thePresident of the United States to makepublicly, because, even though it hap-pened by legislation, this officially statesthat the United States has now gone "onrecord" as officially committed to handi-capped individuals. That is a bright lightwhen we are talking about futures! Hesaid, too, that one of his primary initiativeswill be on Independent living, and, ofcourse, that concerns us a great deal. Iwas very pleased with the President'sstatement. I was not warned ahead oftime what he was going to say, beingpleasantly surprised as many of you were.

Now, let me talk a little bit about thecontents of the Plan. By now many of youhave received information on some of theinitial directions that I hope the Institutewill take to strengthen, expand, and to bemore creative and innovative in terms ofthe R&T Centers. And I hope that theobjectives and goals in terms of this year'sdirections, particularly as they involveR&T Centers, meet with your approval. Idid take the opportunity to discuss thisplan with a number of you before I finaliz-ed it, and I had a feeling that many of youagreed that this would be the most objec-tive and the fairest way to start. I hope youcontinue to think this way because itwould be very meaningful In terms of ourstrength, our building, and what we aregoing to do In concert.

You know the broad mandate of the

legislation. In its broadness it encompass-es the full spectrum of research aOtivillesOf all handlocoped persons whatever theirdisability, the!: ages or their unmet needs,And I think that we can be very Instrument-al in changing the world for handicappedIndividuals, We have Bald this so manytimes with lofty rhetoric, with lots of discus-sion, with lots of planning, but we reallyhave not been able to translate that into aproduct or a commodityInto the Idealservice delivery models for handicappedIndividuals, I know that you are sensitiveto the community of handicapped indi-viduals, to their uneasiness, their impa-tience, their appeal to do something,I hope that we can do some of thesethings. It's time for a changel This is themoment! However, we have to, on the onehand, instigate change for good things tohappen. But we also must be prudent thatwith change must come patience, be-cause a certain amount of accommoda-tion must take place in all change.

So I am hopeful that with our mandate,and specifically with the Research andTraining Center Program, we will be ableto provide the programs of rehabilitationresearch to train personnel engaged inrehabilitation activities so that the needsof handicapped IndMduals in geographicareas served by the Centers are taken Intoaccount in program activities. Aspects ofresearch such as applled, basic, medicalrehabilitation research; research on psy-chological and social aspects of reha-bilitation; research into vocational reha-bilitation and research on blindness anddeafness are all conducted by theseCenters. I would hope, too, that with thesekinds of goals and objectives in mind, wewill be able to expand your core researchprograms with the new initiatives that wemust address ourselves to withinlegislation. This is a golden opportunii ,all Centers to expand responsibilities andaugment ongoing projects, for there is aneed to fortify and to expand Researchand Training Centers. There Is a need tobecome more creative and innovative inour research and demonstration projectsand to think more in terms of utilizationand how we can best serve handicappedindividuals with our models of utilizationand dissemination activities.

Within those priorities we will, of course,become involved in the many areas ofprevention, restorative management, andmaintenance management. What arethese optional models and which are the

best to demonstrate and transfer ihrouQhout the country? We will also addressourselves to all the problems concerninghandicapped individuals in terms ofmodelshousing, transportation, employment, the employer, How can we bettermake a marriage with industry so that wecan get into marketing? We have donesome wonderful things with Industry, Wehave enchanted them to demonstratesome very unique devices, especially Intechnology, that are very meaningful tohandicapped individuals, We never seemto get to the marketing, and that aspectneeds a great deal of attention and effort.We are going to try to coordinate benchresearch and applied research into theMal model of service delivery. We willattempt to delve into any area that Isinnovative, that is creative, that really ismeaningful to handicapped persons.

I also want to emphasize the Importanceof our international segment to the Nation-al Institute of Handicapped Research.This gives us a wonderful opportunity tocontinue to exchange Information withour foreign colleagues, to initiate creativeresearch which In many cases can gomuch more swiftly in foreign countriesthan In this country, and also to act asforeign diplomats and ambassadors ofthe United States Government. This is a verysignificant relationship when we get to thecommon denominator of serving handi-capped persons. It is almost akin to themusical world. Musicians immediatelyhave a rapport with each other . . theyseem to belong on the same wavelengthwithout discrepancies and obstacles tocommunication. They understand eachother. And I think that in many ways thoseof us in the handicapped world instinctive-ly understand each other. We have a fewrough edges, but I think we can overcomethese. The time has come when we mustspeak with one voice. We have spokenwell with many voices, but we have nottotally synchronized and therefore themelody does not come out as perfectmusic. We must be productive together,we no longer have the luxury of time. Thehandicapped community is impatient,and rightfully so. We know a great deal,but there is a lot of information that wemust "put together." We have had a lot ofgood research done by many of you, whoare really the leaders. You are the peoplewho are the constituency which canrepresent us and create the seMce deliverymodels that we are aching for in this

country, And then we must become theleaders for the world because the UnitedStates Is still the focal point to which every.one looks,

Let me also say that many of the prioritiesthat you will be receiving very shortly as afollow-up to my earlier correspondenceare following many of the mandates in a"stretched way," to do so much with solittle. I must be very prudent, however, andI hope that you will be generous with yourthoughts in terms of how the institute istrying to get off the ground, it is difficult. Wehave many arenas into which we mustenter not only to build bridges but tomend bridges as well. And with that, toalso spread the message that the instituteis the place where handicapped researchis going to be meaningful and really serveour country's handicapped individuals,So when you have differences of thought,remember, I am only a telephone away, Iam not inaccessible, You can share youranxieties, your questions, your Incompleteinformation, and your half-sentences,which I find are very common. The bestway to get information is to go to thesource, and I'll be glad to answer yourquestions if they are not resolved elsewhere to your satisfaction,

I hope that now I have set the stage, thatfrom now on, as I stated in talking aboutthe future, we will continue to talk together,to think together, to disagree with eachother, to agree with each other, to com-promise, but we will do it together. This isthe only way that this institute will bemeaningful, not only in terms of yourgoals, your commitments, and your as-pirations, but to the community which weservehandicapped Individuals. That iswhat it is all about! We need each otherand from now on we must talk as "we"and no longer "you" and "me." We aregoing to make this an Institute that will benot only of academic excellence, buthopefully one which will be productiveand meaningful, proof that It was worth-while to create this National Institute ofHandicapped Research.

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Special Greetings

it

Edwin W. Martin, Ph.D.Assistant Secretary for Special

Education and Rehabilitative ServicesDepartment of EducationWashington, DC

Dr. Edwin Martin was confirmed by theSenate on June 18 (shortly after this con-ference) as the first Assistant Secretaryfor the Office of Special Education andRehabilitative Services in the new Depart-ment of Education. Dr. Martin has servedas past Director of the Bureau of Educationfor the Handicapped, as Deputy Com-missioner of Education, and has receivedawards from many organizations servinghandicapped persons, including the Na-tional Easter Seal Society, the UnitedCerebral Palsy Association, the Associationfor Children with Learning Disabilities,the American Speech and Hearing Asso-ciation, the National Association of StateDirectors of Special Education, and theAssociation for Retarded Citizens. In 1970he was awarded the Superior ServiceAward from HEW for "visionary leadershipin developing, broadening, and imple-menting a federal commitment to thespecial education needs of handicappedchildren" and in 1974 received the Honor-ary Doctorate of Humane Letters fromEmerson College at Boston for his leader-ship on behalf of the civil rights of handi-capped persons.

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It Is A crept pleasure for me lo Lis withyou on this important and symbolic Orly,the first cloy of the Depailment of Eoucd-tion's formai existence, I think it Speakswell for the timing of our interseclinginterests that we could meet on such anoccasion, and I look forward to continuingexciting interactions wilh you

The new Assistant Secretariat for SpecialEducation and Rehabilitative Services has,as I see It, four major componentsRSA,NIHR, the Council, and the Office of SpecialEducation. As Public Law 94.142 hasgrown, some have tended to overlook theresearch, training and other discretionaryactivities carried out in behalf of edu-cation for the handicapped. In the Officeof Management and Budget and In theCongress itself, the question has beenasked, 'Well, now that we have all of thisservice money, shouldn't we lust drop theprograms that were designed for suchpurposes as developing new models forearly childhood education and newmodels for dealing with the severely handi-capped? Shouldn't we allow the states touse their own money to do training andperhaps an Innovative activity Instead offunding such enterprises under the Edu-cation of the Handicapped Act?"

Personally, I cannot think of anythingthat would be more short-sighted, any-thing that would be less In the Interest ofthe public, than to cut the service deliveryprograms off from the sources of Innovationand development. And so far we havebeen successful In not only heading offreductions In this area but In maintaininga modest growth. It Is difficult. The budgetshave been tight. There Is a natural tendencyfor available dollars to be vacuumed upinto the service delivery programs andone can, In fact, argue that those arelegitimate priorities. But instincts develop-ed In the years that I have been In govern-ment impel me toward continued balancedgrowth In program development, training,Innovation and model development, dis-semination, technology development, andservice delivery to people. I look forward tocontinuing that.

Focusing on the first of the four com-ponents I mentioned, the Idea of having aNational Institute of Handicapped Re-search has been a dream that manypeople have shared over the yearsthehope of puffing together Increasedresources, more highly developed andtrained staff, and a closer working relation-ship with the research community across

11

o whole brood rangy of disability frominfants through lila eldeily it is on excitingidea, and I intend to work with All of you inevery way possible 10 bring that idea to itsquickest possible fruition, The other clayFred Fay used ihe phrase that "the R&TCenters are the building blocks of theInstitute," and I thought that was aninteresting concept, I look forward toseeing the bullcilnu blocks being putInto place wIlh the cement litiOtHisary togive them a firm foundation for the rest ofour work.

There are a tot of areas where theprograms In education and the programsIn rehabilitation can mutually reinforceeach other, resonate with each other, andamplify the thrust. Peg (Dr. Glanninl) andI have already talked briefly about how wecan Ile together the early childhood endof our activities. The mission of the instituteIs one In which we have a major priority onthe special education side. Many of youknow that over the years we have fundedliterally hundreds of model pre-schootprograms In the 0.3 age range, plus otherprograms In research centers that dealwith rehabilitation as well as several otherprograms tying together R&T Centers andUniversity Affiliated Centers, as well asprograms In schools and private facilities.We also have begun a series of researchInstitutes In the early childhood area. I canlook forward to your meetings In the futureas we attempt to further Increase thecommunication between the researchInstitutes dealing with children's educa-tion and learning problems, and alsocenters where we have been focusing onthe nature and development of learningdisabilities.

We have had an intersection betweenthe various programs that have been partof the Education of the Handicapped Actthat I hope will continue and be amplifiedthrough collaborative work with the Reha-bilitation Services Administration and withNIHR. Perhaps a classical example wasthe research that was done some yearsago indicating that the use of residualvision was not being exploited in mosteducational programs for blind and vis-ually handicapped people. That researchwas well known and recognized In theresearch community but was having al-most no impact on the training community.So we put together a series of traininginstitutes and sessions which eventuallywere available to every teacher of thevisually handicapped In the United States.

Greetings from RSA

Not all took part, but over a period of timea tremendous number did so, I am surelhat this undertaking played (1 role in theMarked increase that has taken piece inthe use of low vision or residual vision ineducating hanclit,apped children,

Similarly, in some of the work done insupporting the Op lawn, we have againtaken early research findings and movedthem into our media and disseminationprogram, where our iraining programthen picked up the technology, 05 it did inthe low vision projects, and conductedtraining institutions across the country totrain teachers to use the Optacon withchildren, For several years we have beenspending about 91 million a year purchas-ing Optacons and training people touse them. It is this kind of research-to-development-to-dissemination and mar-keting-to-teacher education-to-servicecontinuum that we should strive for, notlust within the rehabilitation and researchprograms, but wherever it is possible tointegrate actIvities across the total rangeof disabled persons, from Infancy throughthe elderly, I look forward to that, and Ithink that many activities can be broughttogether. i see that as a major mission ofmine. I think that is what the CongressIntended in bringing the institute togetherwith the Rehabilitation and Special Edu-cation organizations, and I think it is themost exciting part of the whole enter-prise. The opportunity to work togetherand to understand each other's goalsand priorities, to come together arounda common search for knowledge and acommon implementation strategy, will bethe real prospect for the future, and I thinkwe will make progress toward it.

I look forward to working with Peg (Dr.Giannin1), to supporting her, and to work-ing with you and getting to know youbetter. I hope it will be possible for me,even though we do not expect to do a lotof traveling, to stop and visit the R&TCenters and get a sense of what you aredoing firsthand. I look forward to gettingbetter acquainted and to hearing fromyou as to what the priorities should be,not Just for research but for the totaldevelopment of programs in the AssistantSecretariat.

A question and answer period followedthe addresses given by Director Gianniniand Assistant Secretary Martin. This ma-terial appears on pages 10 and 11.

Robert R. HumphreysCommissionerRehabilitation Senrioes AdministrationWashington, DC

Robert Humphrays was sworn In onNovember 7, 1977 as the fourth Commis-sioner of the Rehabilitation ServicesAdministration and served in that postuntil June 1980, approximately one monthafter this conference,

It's very good to be here with you, I didnot mean to preempt your program at all;I lust stopped by as an interested observerto see your progress and see allthe thingsthat the R&T Centers are doing together.

Your Association has come a long wayin a short time and the interchange thathas been going on in the meetings that Ihave observed is absolutely excellent.That has been a tradition with those of youwho have had close relationships with usin the Federal sector in times past, andI am glad to-see it continuing.

Let me say for my own part, and speak-ing for the agency I represent, that i con-cur wholeheartedly with what has beensaid in terms of the need for a very closecontinuing relationship between researchand engineering technology and utiliza-tion activities, as manifested through theResearch and Training Centers and otherresearch components of the Nationalinstitute of Handicapped Research, andthe service delivery system. Just because

12

we ow now Iwo tioparoto ousincloo (tow*not suggest lo me that wa should Qo ourseparate ways ... quite the contrary insofaras the legislative intent is PPIVOrflaCI.1 ama member of the Director's InteragencyCommillee on handicapped Researchand we tire, by statute, also to participateIn the LonaRonge Plan for the institute, Butbeyond that it is vitally important that assoon as the Institute has an opportunity todevelop as an entity, and it is progressingtoward that end, that RSA and the institutehave a strong liaison with each other andinteract constantly In order to insure thegreatest possible results for ihe people weserve, the disabled people of this country.

Likewise, it is of equal and, critical Im-portance that the Research and TrainingCenters maintain their close affiliationwith the state rehabilitation system, if youdo not know what the service deliveryproblems and needs are, you cannotattach relevance to what each of yourespectively is doing, and then we have abifurcated system that really has notreached and cannot reach its maximumpotential.

So if I leave one message with you it isthat I intend to strengthen our alliance forthe benefit of the people we serve, Wehave a new Department of Education Intowhich RSA and the institute have beenthrust. We are a part of the Office of SpecialEducation and Rehabilitative Services,which is much like an Island in an oceanbecause the great tide of the Departmentof Education is education related, We,however, are much more than that, andtogether we need to "educate the edu-cators," to bring to the people In theEducation Department the knowledge ofadult handicapping conditions and dis-abilities in rehabilitation as well as theneeds of children and the needs of olderpeople. And in so doing we can insurethat there is a constant relationship be-tween the Education Department and theDepartment of Health and Human SeMces.We have a Secretary in Health and HumanServices and a Deputy Undersecretarywho are very sensitive to disability issues,and the opportunities for that Interchangeare very great indeed. We can make agreat deal out of this new situation, but Itwill take a lot of coordination and hardwork from everybody concerned who hasan Interest in disability and disabledindividuals and their service delivery andresearch needs. But we can do it, and I armready, willing and able. I know you are too.

9

Questions

Answers

Subsequent to the addresses presentedby Drs. Giannini and Martin, the followingissues were raised from the floor andresponded to by the Director and theAssistant Secretary.

Dr. Paul HoffmanUniversity of Wisconsin -Stout

Q Dr. Martin, we have heard youspeak quite a bit this morning on earlychildhood education which is very Impor-tant and probably has been neglected.But there are these representing the voca-tional aspects too, and I wonder, wouldyou address that please?

Dr. Marlin:

A. Actually, I used the early child-hood example to Illustrate the basic pro-position that the new research institute hasa new challenge and authority and thefact that we have already begun talkingabout how we can work together withoutduplication of effort. But I would add thatthe adult community, both disabled indi-viduals themselves and rehabilitationspecialists, have expressed to me someconcern that, because of my past interestin programs for elementary and secondaryeducation, they might encounter a "get-ting lost In the shuffle" phenomenon. Ithink perhaps only the experiences wehave together over the next few monthsand years will truly reassure people, butI would point out that our concerns havealready come togethereven In the pro-gram which is most closely identified inpeople's minds with childrenPublic Law94-142. The fact is that this law has a muchbrooder concern than children, and thathas been true throughout our history. Ourfirst and longest standing program wehave administered is the Captioned Rimsfor the Deaf Program, a program whichhas had as its focus bra number of yearsMe Wulf deaf community. We have alsoworked with the Rehabffitation SeMcesAdministration in the support of such mat-ters as post-secondary and technical

education projects for the deaf. Similarly, Ihad asked the President, and tt is now re-flected in the budget, for a minion and ahalf dollars to begin adult educationprograms for disabled adults, as well, aspart of the outgrowth of the funding pack-age that we began some years ago.Those programs which began for the deafhave been expanded in a number ofcommunities to encourage the partici-pation of disabled adults in college anduniversity programs, but not much hasbeen done to stimulate the participationof disabled people in adult educationprograms, and so we will be funding somemodels there.

The exciting part of the new job is, in fact,that one does not have to limit oneself topeople aged 21 and under.

Dr. Fredric KotticeUniversity of Minnesota:

I am very pleased this morningto ear both you and Dr. Glannini talkabout the development of a comprehen-sive program of rehabilitation which hasreally been the thrust of the R&T Centerssince their Institution and even beforethat. You mentioned true concept of theseas "the building blocks" of the new institute.I think of it the same way because it reallyIs the only continuing group of peoplecommitted to continue research in thisarea of rehabilitation for handicappedpersons. I have concern, however, that theplan for financing Is divisive rather thancoordinated in that, in spite of the fact thatover the past eight years we have askedfor the kind of a program that allows us towork together and cooperate so that weare not competing in a dMshe way, thelimited funding plan again this year says,"You will compete among yourselves forthe scraps of money that are available."And I hope that both Dr. Glannini and you,Dr. Martin, think about this, because if youare going to have inter-institutional co-operation it cannot be built on inter-institutional competition for projects. As amatter of fact, the whole R&T Center con-cept is a program concepta criticalmass of people getting together to workon problems that are long-term researchwith progressive development as we getnew information so that we can eventuallyresolve in a meaningful way the problemsthat the whole gamut of handicappedpeople experience.

13

The idea of regional centers grew out ofthe realization that one could not build asingle center in the United States withoutdepriving all the rest of the country of theresources of people that were available,and by placing regional units in univer-sities we can make use of the resourcesof the universities, make use of the co-operative arrangements that existed there,and have a very significant multiplier effectfor research, for stimulation of new Ideas,and for teaching, which is by far the bestway of dissemination and application ofnew information. if we are going to besuccessful, however, it is not as a group ofuniversities each one working alone ontheir own problems, but through cooper-ation between centers and between uni-versities. We have been hying very hard tobuild this kind of inter-institutional cooper-ation with a cement that makes it possiblefor really free exchange of informationwithout the sense of competitiveness, with-01.4 the fear of piracy, without the secretenclaves that so often occur in defense ofone's own actMtles when we hove a com-petitive program. And yet again this year,possibly with inadequate feedback to Dr.Glannini because she certainly did try tocommunicate, I feel what is proposed asa competitive plan deserves reconsider-ation of a better way of producing acollaborative plan. So I would like to pointout that we are very enthusiastic aboutwhat you are doing and the beginning ofthe development of the institute, but wffhinour own little needs and programs we seethis as a problem to he resotved.

Dr. Glannini:

A. I do appreciate what Dr. Kottkehas stated. I assure you that no dMsivenessIs intended. First of all, let me clear therecord. This plan is not intended to changecollaborative of that have been inplace for years, but rather to strengthenthem. This is not a dMsive method basedpurely on competition, but rather to haveacademic excellence surface. I also would.:!e to remind you that monies that are;ompetitive" are just In-house for R&T

Centers alone. Hopefully this will allowyouto be creative and innovative within yourprograms without too much disturbance.You could also augment your ongoingprograms and still allow the institute tomeet some of the mandates that we haveduring this year. Fiscal year 1980 Is del-

cult tecause we are at the same level offundzig that we were last year, and yet wehave a lot of new responsibilities. There-fore, I did a lot of thinking and soul search-ing on how we can both manage to meetour goals and objectives. In 1981, ofcourse, we will be in a different era. We willhave, hopefully, more money, both for R&TCenters and our other projects. With whatwe have Initiated this year as a base wecan not only expand your basic R&T Cen-ters but also expand your R&D projects.

The other difficult area that we have toface is that we at the Federal level cannotrespond to your inflationary needs. I hadhoped that many of you would have yearend money, and I know that a number ofyou do. I do not see any point in takingmoney away from those of you with bal-ances and gMng it to others when you stillhave problems in-house. That was thereason that I did talk to a number of you.I thought that there may be some localissues that I did not see property and thatwith your explanations I could view andassess a little differently. To sum up, let meJust sayon the one hand we have thesame amount of money that we had lastyear. On the other hand we have a tremen-dous area that we have to cover. I thinkthat for one year if we could pull ourselvestogether to do this, tt wilt be the mosteffective way to go.

I would be glad to discuss this furtherwith you, collectively or individually. I amwilling to search for a better solution shortof gMng lumps of money indiscriminatelyto certain R&T Centers. I do not think that Isjustified, and I do not think It is fair. TheR&T allocation of S1.2 million will give all ofyou an equal opportunity to augmentyour programs.

Dr. John GoldsehmidtNorthwestern University:

Q. Dr. Martin, I have a commentand a question to address to you par-ticularty, and perhaps Dr. Glannini mightjoin in. For some time the colleagues thatyou see here and around the countryhave concerned themselves about thepossible consequences of entering therealm of education as a health - relatedservice system. You have assured us thismorning that we will not get lost In theshuffle In such a large, complicated, inter-twining network. I am more concerned,

however, about the shuffle that the childrenmight get into and would like to addressa particular question to you.

The child who is mainstreamed, who issent into the community, who gets into thehands of special education teachers,who goes through prescribed local pro-grams, protocols of educational activi-tieswill they have adequate diagnosesbeforehand? What linkages will there befor an appropriate, adequate, discretediagnosis of the problem that the Indi-vidual child has prior to their being main-streamed and put into common protocol?I do not expect answers from both of youon this. I think it is a researchable problem,and it requires a great deal of thought sothat the individual child does not get lostbetween the health seMce field on theone hand, who may know little aboutlearning disabilities, through vocational,through senescent stages of life cycle;and on the other hand the educationalcycle which may think that they hove thediagnoses well at hand when oftentimesthat is not the case.

Dr. Marlin:

A. Let me try not to be premature inanswering what is a sophisticated ques-tion. Part of our interest in the past fewyears has been to stimulate training withinthe pediatric group concerning P.L. 94-142, and I have met with various peoplein that field and taken part in conferences.We have also spent some time with theAcademy of Child Psychiatry in a similarseries of discussions. In those meetingsthere has been raised a number of timesa concern among physicians that theoriginal identification of children withdifferent disabilities is not specified by theFederal statute with regard to who should'be involved in that process. Part of this isthe historic separation of education fromthe Federal government. All of the stateshave state statutes which cover the sub-ject of how a child is identified. They vary,however, from state to state. In general,when the Congress passes educationlegislation It does not get over into settingstandards within state activities. And thelegislation did not specify which special-ists had to be employed by the states inthe Identification process, although theAct does spell out that, in fact, the childrenneed a multi-disciplinary look and thatappropriately trained specialists mustbe involved.

141

Now, the logical and simple solution toconcerns of this kind might seem to be forthe Federal law to mandate the require-ments for various specialities. in practice,however, there would be problems, espe-cially because of the traditional separationbetween the states and the Federal govern-ment in this area. It is an issue that I knowhas been raised to the Congress in over-sight hearings, and I expect It will continueto be raised. For example, questionsabout the Act are impelling us to get Intothe Issue of related services. We alreadyare facing how to make policy judgmentsas to which specific related services mustbe provided for handicapped children inorder to carry out the Intent of the law, andI think that both the Department and theCongress will be facing issues of this kind.In the meantime the best advice I cangive to organized groupseducators, re-habilitation specialists, physicians, andothersis that this is a problem that has tobe confronted at the state legislative levelin those states where the state does notnow provide for specialists with appropriatetraining. I think It will be difficult to get theCongress to mandate universal Federalstandards In the education area, althoughobviously they have in health relatedareas. But I do not see the problem asbeing any different for mainstreamedchildren than for children In special schoolsor special classes. The basic Issue is "whodecides when a youngster is handicapped,who are the members of the team, whatare their credentials, and ultimately whohas the general supeivision of the treat-ment process?" All are tough questions.

Dr. Glannini

A. There is in place now a trainingprogram, with the cooperative effort ofBEH and the Academy of Pediatrics, thatwill have specific training programs onlocal and national levels by an assignedfaculty from the Academy of Pediatrics.I also think that within the law, if i remem-ber correctly, the clinical support servicesare quite clear. However, the problem is

that the funding does not follow the man-date on the local level, so as you wellknow, the local communities and thelocal school boards have to decide howthey are going to finance it. Until thatproblem is resolved It is going to continueto be a vicious circle.

11

RTC Input Intothe NIHRLong Range Plan

Medical Research Plan

Moderator - Joseph Fenton, Ed.D.Special Assistant to the DirectorNational institute of HandicappedResearch

The legislation (P.L. 95-602) establishingthe NIHR sets forth specific researchareas, of which the RT Center Programconstitutes a major portion. It was, there-fore, important in the development of theNIHR Long-Range Plan to include identi-fiable programs that RT Centers, as wellas other NIHR programs, might projectover the next five years.

In accomplishing this, an organizationalstructure was developed which was feltcould best involve faculty of all types ofRT Centers. Accordingly, six individualswere appointed to represent the medical,blindness, vocational, mental retardation,mental health, and deafness Centers andto assume responsibility for developinginput into the Plan Leaders were asked toreceive extensive input not only fromother RT Centers of their respective dis-ciplines, but also from consumer andvoluntary organizations, state agencies,regional offices, and others.

A twelve minute period was provided foreach leader to discuss results of this effort.

John W. Goldschmldt, M.D.Associate Project DirectorNorthwestern UnNersilyMedical R&T Center

Dr. Brammell and I were requested toaccept the task of participating as coor-dinators in long-range planning for NIHRat a meeting in Washington, DC by Dr.Glannini, Dr. Fenton and other NIHR staffmembers and consultants. A meeting ofrepresentatives of the Medical R&T Centerswas held at the Rehabilitation Institute ofChicago. Some 24 members of the medi-cal rehabilitation disciplines includingmembers of ACRM and AAPHR participat-ed by invitation. One hundred twenty-sixprojects were generated which addressedidentifiable and researchable issues pos-ing problems of high priority for resolutionby medical R&T Centers. Specific researchproblems and the relevance for the needto address each issue were recorded. Foreach problem area, strategies, activities,demonstration, and investigative meth-odologies were recommended. It was notan editorially consistent and cohesivelywritten document by the conclusion of thefirst meeting, but it was a representativeinitial draft. Byron Hamilton, Paul Corcoran,Fred Fay, Gerben DeJong, Bruce Maloofof ABT, Inc., and many others gave upvaluable weekends in order to consoli-date the ideas and further refine the planin the short time available.

There are currently 46 pages to themedical recommendations and there are

certain themes which run throughout. Werecognized first of all that rehabilitationis a process through which the patient orclient progresses toward optimal perform-ance. It is not something that is done tothe client, for the client, or on the client.The patient or client is assisted in theprocess of achieving the goals set.Ideally, if able, the individual sets thegoals assisted by family and professionals.It was recognized that there needs to bea continuity in the process, and the themeof continuity was preeminent in our mindsas we approached the final taxonomy oroutline for presentation of the plan.

The outline tracked the continuum ofcare through six component elementsand addressed illustrative issues in each ofthe following topical areas: (1) Prevention,(2) Diagnosis and Functional Assessment,(3) Natural History of the Disability, (4) Re-habilitation Medicine Management, (5)Environmental Adaptation and Indepen-dent Living, and (6) Community Follow-upServices and Health Maintenance.

In addition, certain contemporary themesof rehabilitation were important to consider

Rehabilitation of the vocationally needyhad to be expanded now to include theyoung and the elderly. It had to Includeother underserved persons, populations,and socio-cultural conditions that differ invaried regions.The management of man-machine de-

pendency that has evolved and createdadvancements in life-support systems whileoften creating more and greater problemsof physical impairment.

xemaiments.m.r.,-.4st

The problems and themes of quality of lifeand independent living had to be address-ed with some forcefulness throughout thiscontinuum of concern !or life-maintellanceand rehabilitation.

le responsibility to contribute to improve-toents in the planning, management, andevaluation of rehabilitation service deliverysystems is a continuing challenge.

The current capacity and the further de-velopment of the capacity to undertakeresearch in medical rehabilitation remains aproblem. Inadequacy of research man-power, mind-power and funding continue.

I will list by general issue some of theillustrative problems in this continuum ofcare as presented in the medical planand present samples of possible researchapproaches within each. The methodolo-gy and research design cannot be detail-ed, but the goal to be attained and thegeneral strategies are set forth as examples.Prevention

Expand trc- of health professionalsin genetic co,, Jling and evaluate theeffect of genetic counseling on reducingdevelopmental disabilities and MR.

Demonstrate and evaluate educationalprograms for teenagers, leading to great-er changes with respect to birth-relateddisabilities, auto accidents, spotting injur-ies, firearms use, drug and alcohol use,nutrition, smoking, physical fitness, andother factors related to high risk populations.

Demonstrate the value of various ap-proaches to improving pre- and neo-natalservices and public pre-natal care edu-cation programs in presenting birth defects.

Demonstrate the value of joint effortsamong employers, insurers, and mediawith regard to prevention of industrial andhousehold accidents.

Undertake research on the cost-effective-ness of early detection and screening forhypertension. Perform research and de-velopment on methods of improved com-pliance with prescribed medical regimensfor management of hypertension.

Investigate factors In obesity, weight con-trol, proper nutrition and how they affectarthritis and other chronic degenerativeillnesses.

Devise research models which can elu-cidate the role of disability payments inthe epidemiology of chronic back pain.

Identify long-term disabilities related tomarijuana, cocaine, and other recreation-al drugs.

Improve the understanding and treat-ment of contractures and other limitationsof joint motion secondary to inactivity.

Undertake research into the causes andprevention of pressure ulcers in bed-confined persons and wheelchair users.

Pursue research and development to im-prove neurogenic bladder management.

Develop better methods of early preven-tion, recognition and management ofthromboembolic complications, osteo-porosis and heterotopic calcification,postural hypotension, autonomic dysre-fiexia and thermo-regulatory disorders.

Undertake research into the preventionof pulmonary infarction, atalectasis andpneumonia in bed-confined patients.

Investigate health maintenance inter-

ver

AlrA :14-0.1., 4

..ur

ventlons for disabled persons such asnutritional and recreational programs.

Research and demonstrate the value ofwheelchair sports in physical fitness pro-grams for handicapped.

Research the effects of sensory depriva-tion, body image alteration, and cosmeticappearance on the adaptation of theperson to disability.

Investigate psychic, spintuaL and religiousfactors In adaptation to disability.

Develop strategies to reduce the psych-ological regression that accompaniesprolonged immobilization, bed rest andlack of participation within the mainstream.

Research the causes and prevention ofsuicide and other selkiestruclive behaviorsamong disabled people.

Improve physician education with re-spect to the prevention of recurrence ofillnesses or injuries which cause disability.

Improve physician education with re-spect to prevention and to the alleviationand provision of basic primary and medi-cal and dental care for disabled people.

Develop and evaluate models for earlyrecognition of disabilities in underservedpopulations, Including Native Americans,Blacks, Hispanics, migrants, and otherrural populations.Assessment

Develop human performance labora-tories. having the capacity to quantifymobility and neuromuscular disordersand their effects.

Develop simple, reproducible, inexpen-sive techniques for measuring spasticity.

Develop inexpensive, non-invasive car-diarespinatory monitoring and telemeteringsystems for use with a physically disabledindividual with associated cardiopul-monary impairments.

Apply the vast existing body of know-ledge about electrodiagnostic procedures.

Management at chronic pain syndromes.Long-term performance outcomes in

growing children with disabilities.Develop predictors of long-term voca-

tonal outcomes to proAde a realistic basisfor educational and vocational planning.

Investigate the influence of behavioralvariables on functional outcomes andvarious disabilities.

Develop normative data on the relativevalue of various living arrangements, pro-ductMly levels, and lifestyles of peoplewhether ablebodied or disabled.

Natural IlltdotyAcquire disability data on computerized

basis, statistics annually updated through

existing census data, public health regis-tries, agencies of the government andprivate facilities having direct contact withpatients and clients. This would help us inthe identification and early screening forat-risk populations for disability.

Establish a national service center, simi-lar to the Center for Disease Control inManta, for the purpose of data acquisition.storage, retrieval, and dissemination withrespect to the natural history of disability.

Acquire statistics on disabilities by etiolo-gy, anatomic and physiologic impairments,performance deficits, and behavioral dys-functions, mobility, sensation, coordination,communication, interpersonal relation-ships, ADL and other subsets of impairmentand functional loss.

Rehabilltalion Medicine ManagementExpand demonstrations of improved

emergency care, evacuation, and referralto special centers after burns, multipletrauma, brain and spinal cord injuriesin particular.

Develop diagnostic measures of the ex-tent of tissue damage and developmentof methods for eliminating the extent oftissue damage and enhancing neurologicrecovery in the period immediately follow-ing a brain or spinal cord injury.

Develop centers for neuro-biologicalstudies of spinal cord regeneration.

Critically evaluate the role and relativemerits of the numerous proprioceptiveand sensory facilitation techniques whichare used empirically in the managementand therapy of neurologic disorders inorder to distinguish a specific therapeuticeffect from the general benefits of atten-tion and stimulation which accrue fromtherapeutic interventions.

Environmental Adaptations andIndependent Living

Develop the rehabilitation engineer as aroutine functioning member of the reha-bilitation team, not just for research but totake an active part in developing anddelivering services such as general equip-ment evaluation, designing constructionof special devices, modification of com-mercial devices and assistance in deviceselection and prescription, and rapidcommercialization and marketing of re-habilitation technology through specificresearch and development activities.

Develop a direct smoothly functioningfink between NASA and NIHR to assure

rapid application of technical develop-ments from the space program and toacquaint NASA persor,nel with the engi-neering neeos of disaoled individuals.

Carefully study financial disincentivesto gainful employment.

Health Maintenance andFollow-Up Services

Every medical, dental, and nursing stu-dent should be trained in the basic atti-tudes, skills, and knowledge contentareas having to do with disabilities as theyrelate to their respective health disciplines.

Post-graduate residency training pro-grams in the medical and surgical spe-cialties should include training in therehabilitation aspects of disabilities.

Mental health professionals need theaddition of curricula concerning psycho-logical aspects of disabilities in their basictraining so that they conceptualize morethan Just specific problems of mentalhealth and mental disease.

There are many more issues, recom-mendations, and discussions containedwithin the complete document. Hopefully,you will all see the document at a futuretime. We have placed great emphasis onprogram versus project development ofthese research areas, and we recognizethe strong need for research capacitybuilding and further development, withoutwhich we cannot pursue any of these asprojects in any meaningful way.

Following Dr. Goldschmidt's presentationon the Medical RTC Research Plan, addi-tional comments were provided by theco-chairman of this group, Dr. H.L.Brammell, Director of the Medical R&TCenter at the University of Colorado. Dr.Brammell suggested the value of an iden-tifiable section of the NIHR Long RangePlan which would deal specifically withthe research activities of the RT Centers.it was further pointed out that many of theresearchable issues In the medical plancut across many specialty areas and there-fore highlight the need for collaborationwithin meaningful research efforts.

17

Blindness Research Plan

Thomas S. Baldwin, Ph.D.Project DirectorUniversity of North Carolina at Chapel HillBlindness R&T Center

Let me introduce the approach thatR7-24 took to the blindness section of thePlan. First, our group had some problemsthat were perhaps a little bit different frommost of the other groups, which may havebeen good ar bad. For one thing, we arethe only R&T Center on blindness, whereasa number of other areas concerninghandicapping conditions have severalcenters and have been in operation forsome period of time. RT-24 had been inexistence for six months at the time wewere asked to participate. Some of mycolleagues who represent other groupssuggested that in their particular pro-fessions there were other long-range planswhich they had been able to integrate.Unfortunately, most of the work in the areaof blindness has been somewhat projectoriented and had never been pulled to-gether in any cohesive way. While wefaced some problems, we were able todraw up a plan representing a course ofaction without a lot of previously heldbiases from the field of work for the blind.

There were two major approaches thatwe used in developing our plan. First, wesurveyed some 208 public and privateagencies involved In work for the blind,including all 100 state vocational reha-bilitation agencies and state specialeducation departments, and 108 of themajor private and public organizationsinvolved in work for the blind. We received

55 responses, Identifying over 100 separateproblem areas, in less than three weeks.

In addition to our national survey ofsome 208 agencies, we had very strongsupport from our National Advisory Councilwhich represents consumer, public, andprivate organizations involved in work withthe blind. The Council met with us on anumber of occasions throughout January,February, and March to assist in the devel-opment of the final plan.

The problem at the beginning was thedegree of specificity in the developmentof our plan. We realized early that theidentification of broad problem areas,under each of which a large number ofspecific projects might be undertaken,was probably the best approach. The firstpreliminary draft was produced on January29, followed by a meeting with the AdvisoryCouncil on February 4 and 5. A seconddraft was developed by February 19, andthe Council convened at the end ofFebruary to establish priorities and funding.There were 62 major problem areas thatwere identified in the final plan. Under anyone of these a number of projects mightbe generated. Unquestionably, the largestproblem that both the surveyed agenciesand the Advisory Council identified wasemployment. Under the general area ofEMPLOYMENT In the Held of work with the blinda number of problem areas were noted:

Unemployment as probably the singlestrongest problem

Underemployment (i.e., use of shelteredworkshops when a person could be pro-ductive in a competitive work setting)

Incentives to employers to assist em-ployed blind workers to progress throughthe company career ladders.

Job retention of the adventitiously blind-ed individual (since many of these people,because of the trauma associated with theloss of vision during the working wars, simplygive up; whereas, with appropriate trainingmany of them could retain their jobs)

Pre-vocational training or the lack ofpre-vocational training to permit blindpersons to know what options are avail-able to them rather than having the stereo-typic notions that there are very few careerswhich they can enter, such as music orsheltered workshop work. Orientation and mobility training, parti-cularly for to multi- handicapped blind

The second biggest area as a wholethat was identified was BEHAVIORAL ANDSOCIAL ADJUSTMENT of blind people, withthe following major problem areas:

.18

Behavioral and social adjustment parti-cularly for the pre-school child, since fail-ure to develop normally through thisperiod prevents him or her from catchingup in behavioral and social adjustmentInterpersonal relationships of blind peo-

ple throughout the life span. The self-Image problems that blind/visu-ally impaired people typically encounter

Under the category of SYSTEMS BENEFITS,a surprisingly large number of major prob-lems were identified, among which were:

The question of the quality of servicesthat are provided by both public and non-governmental agencies

Delivery of services in the home and inneighborhoods to prepare clients forindependent living (since many peoplewho are blind simply refuse to leave hometo come to a rehabilitation center for anextended period of time. This Is being deaffwith now through the independent livingservices program that Is being implement-ed, but we really do not know how best todeliver these services to blind people intheir homes or In their neighborhoods.)

The lack of job identification and place-ment services that would permit a rehabili-tation counselor to know how best to workwith industry to find employment for theblind and visually impaired. The failure to apply research done in thearea of low vision, particularly until somespecific Federal action is taken (i.e., theophthalmologist and the optometrist knowwell how to deal with corrective lenses ordevices to assist a person with low vision tomake the best use of residual vision, butthey cannot afford the time to work withand train the client; therefore, low visiondevices frequently are not used.)

Prevention of blindness and the fact thatblind people 1:-.a not aware of availableservices we so considered to be majorareas of .,icern. Even though NorthCarolina has a separate agency for thevocational rehabilitation of the blind, it isamazing how many people have calledthe Research and Training Center since itwas established and have stated that theywere not aware of the state agency andthe existence of the services it offers.

I have touched just very briefly upon thenumber one priority category in our plan.The problems that were identified as num-ber two and number three priority havenot been mentioned. However, the re-sources likely to be available over the nextfew years will probably all be absorbedthrough top priority issues.

15

Vocational Research Plan

-ix

Vernon L Glenn, Ed.D.Project DirectorUnhrersily of ArkansasVocational R&T Center

16

The vocational R&T Centers, Universityof Arkansas, West Virginia University, andUniversity ofWisconsin-Stout, ore designat-ed os vocational centers established toconduct programmatic research andtraining in the psychosocial/vocationalareas of rehabilitation.

The three R&T Centers are alike it manyrespects in that each responds to sp%..cificinformation needs In the areas of reha-bilitation management, program evalua-tion, client intervention strategies, andservice delivery systems. Each has anongoing involvement with a vocationalrehabilitation state agency; each dissemi-nates research and training informationon a rational basis; each is organized toachieve its mission through research,development, training and evaluation;and each of the three centers serves as asponsor and coordinator of one of thethree national studies on rehabilitationtopics through the Institute on Rehabili-tation Issues. This background InformationIs provided as our past and present activi-ties strongly influence the projected needsin the psychosocial/vocational area forthe next five years.

Because of the short time-line establish-ed by the National Institute of HandicappedResearch for submitting our plan, we didnot have sufficient time to adequatelydevelop a long-range plan that clearlyoutlines the needs in the psychosocial/vocational areas of research and training.

The format used In the plan Identifiesresearch under three areas.

1. Research Contributing to IndividualClient Benefits:

EmploymentThe major thrusts of research In this area

are to identify barriers to employment ofhandicapped persons from both theperspective of the handicapped personaria from the perspective of the profes-sionals who ar9 delivering services relatedto employment, vocational evaluation,vocational training, and placement ofhandicapped persons; secondly, to Im-prove the validity and reliability of thevocational evaluation methods presentlyused to place and train the severelyhandicapped persons; third, to conductlongitudinal research on vocational de-velopment, vocational adjustment, andvocational functioning of ,rehabilitationclients; finally, to conduct research onmethods of producing more active involve-ment of clients in vocational planning,

19

evaluation and placement. The completereport includes a description of 35 projectsthat are targeted at these objectives.

Vocational Training/EducationThere Is a strong need to identify services

that are presently provided by profession-al staff that could be taught to parents ofdisabled children. Programs such as Ian-wage instruction that are presently pro-vided through formal services could beinstituted In homes If parents were trained.There is also a strong reed for research onmethods of better specifying competenciesand performance objectives and alterna-tive learning assessment techniques withdiverse disability groups. Training In specificcompetencies could then be improvedso that vocational evaluation, work adjust-ment and vocational training programswould be enriched.

Housing, Mobility, and TransportationResearch is needed In these areas to

identify the affect on housing needs andtransportation needs of the handicappedpopulation as a result of deinstitutionall-zation. It Is hoped that these types ofsurveys would also allow cost effectiveprograms to be established by communi-ties to solve the independent IMng needsof handicapped persons within the restric-tions naturally placed on the communityby their housing and transportationcharacteristics.

CommunicationMany programs being proposed by

different states In the development of theindependent IMng services include com-ponents of hiring and training handi-capped persons to provide independentIMng services. Most of these people havenot been trained in communication skills,interpersonal skills or supportive counsel-ing. Research is needed to developmethods of training these handicappedgroups to deliver services presently beingprovided by non-handicapped profes-sionals. In addition, there is a need toexamine some of the newtechnologies incomputer applications and biofeedbackmethodologies to Improve communica-tions among handicapped persons andbetween professionals who deliver servicesand handicapped persons who needinformation, training, and other services.Behayloral/Social Adjustment

Research In this area Is one of the majorthrusts of Vocational Rehabilitation Re-search and Thaining Centers. Over 30 specic

projects are included in our completereport of a research strategy. These pro-jects range from the need to developtechniques to shift the responsibility forbehavior change and growth from theprofessional helper to the handicappedclient, the need to develop vocationaldecision-making skills and abilities inrehabilitation clients, the need to identifythe interp3rsonal variables that influencethe adjustment of handicapped persons,and the need to analyze the environmentin terms of factors that are related tosuccessful and non-successful coping withdisability, and the need to identify anddevelop methods of producing general-ization of successful coping skills acrossdifferent settings for different disabilities.The scope of the research in this areaincludes the identification of successfulintervention procedures in fields allied torehabilitation as well as to develop newmethods that will enhance psychosocialadjustment of handicapped persons.

RecreationThe thrust of this research is to develop

methods that will facilitate adapted physi-cal education and recreation therapy forthe severely handicapped adult as well asto Ider,Ify recreational barriers encounter-ed by the handicapped during vacationsand metnods of decreasing these barriersin a cost effective program.

Environmental AccessibilityThe objectives of research in this area

are to identify and utilize situational-environmental resources that will aidhandicapped persons in overcomingbarriers in psychosocial adjustment at allages. These projects range from studieson the effective utilization of electronicaids to the application of other adaptiveequipment and ergonomic designs tofacilitate the delivery of rehabilitationseMces and to enhance independentliving of handicapped persons.

AssessmentThere are many high priority needs for

research on methods of identifying dis-crepancies between vocational evaluationinformation and client performance invocational training programs as well as inwork settings. In addition, research is

needed on assessment of human seMcedelivery systems, problems, and particularstrategies that promote successful adjust-ment both within the facilities and in inde-pendent living. Evaluation of employment

potentials of severely _:..dicapped per-sons and evaluation herapeutic andcognitive gains as c Lion of clientservice delivery provider is...htionships areneeded. It is hoped that the assessmentstrategies represented by the 15 researchprojects described in the long-range planwould improve our knowledge of 'ciandl-capped persons' needs and rehabilitationservice delivery needs.

2. Research Contributing b Improve-ments in the Planning, Management andEvaluation at Unless far Disabled Persons

Effective and efficient seNioe delve rysystems is an area Wh210 Vocational Rai'Centers make a major contribuTion torehabilitation agencies, and there Is acontinuing research and training need Inthis area because of the following:(a) In 1970 the population of the disabledin the United States was estimated at 11million. Beginning in 1980, ten years later,this population is estimated to exceed35 million, with more than 10 million beingcategorized as severely disabled. It Is

projected this increase will continue dueto the Increase in population, the increas-ed life span and the continuation ofdisabling conditions caused by diseaseand accident.(b) Recent legislation passed by the 95thCongress has expanded services to thedisabled in all areas of living. This includesequal opportunities in housing, employ-ment, education, removal of architecturalbarriers, the involvement of consumers inpolicy decisions and expanded seMcesto include independent living rehabilitation.(c) Accountability in human service agen-cies NA receive greater emphasis during the1980's. The public as well as organized con-sumer groups are demanding high qualityservices while economic conditions arerequiring more resourcefulness In thedelivery of rehabilitation seMces.

Research and training in the totalmanagement area is greatly needed toidentify ways to effectively use personneland resources to provide high qualityservices to the disabled population.

3. Research Contributing to the Advance-ment of the Capacity to Conduct Researchand to Store and Disseminate Information

Research outcomes, in order to haveimpact on the field of rehabilitation, mustbe reflected in usable procedures andtechniques. However, the skills and pro-cesses of research are much different

from those required In the seMce deliveryprocess. Because of these differences inlanguages, methodologies, processes,and goals researchers and practitionersview hypotheses and problems from dif-ferent perspectives and within differentframeworks. This makes effective utilizationof research outcomes extremely difficult.

There is need for research in the area ofstoring Information which can easily beaccessed by researchers, and thereneeds to be a national effort in the areasof vocational'evaluation, work adjustment,and facility management to design re-search studies so that research outcomescan be easily translated into practicalprocedures and techniques.

Information about rehabilitation ser-vices abounds in professional journalsand literature. But there is a need forresearch and training both to develop asystem and to train practitioners in theeffective utilization of research for solvingpractical problems.

Projects were developed under thesethree categories using the following format:(1) Title of Project, (2) Statement of .theProblem, (3) Planned Research Strategy,(4) Potential implications of Research,and (5) Projected Costs.

In developing the projects we solicitedideas from our Consumer Advisory Com-mittee members, other university person-nel, facility personnel, and representativesc' the Council of State Administrators of,t,cational Rehabilitation.

The final plan submitted to the NationalInstitute of Handicapped Research repre-sented 199 projects that have potential forcontributing to the solution of problemsand needs of handicapped populationsIn the psychosocial/vocational areas. Theprojects are respondent to the multi-faceted rehabilitation process in humanseMce agencies which requires researchand training over a broad and diversearea of human functioning, which in-cludes mobility, communications, cogni-tive intellectual development, personaland/or social functioning, vocationalfunctioning, developing intervention strat-egies in training, counseling and environ-ment changes, and impacting the policyprograms and management systems inhuman seMce agencies. Much work stillneeds to be done to refine the projectsand Identify their potential contributionsand impact on improving the quality°, lifefor the severely handicapped population.

17

Mental RetardationResearch Plan

Mck F. Heber, Ph.D.Project DirectorUnhrersity of WisconsinMental Retardation R&T Center

18

The plan for mental retardation reallyapplies to all developmental disabilities inthe main. We addressed the whole issueof developmental disability, except forthose aspects that we felt would be cover-ed by the medical rehabilitation group. Allthree R&T Centers in mental retardationTexas Tech University, University of Oregon,and University of Wisconsin were heavilyinvolved in this plan. Special credit is givento Phil Browning who very kindly spent acouple of weekends in Madison to assistIn compiling the materials. We also hadvigorous input from the American Asso-ciation of University Affiliated Programs(AAUAP) through the participation ofSeldon Todd, Executive Director of theUniversity Affiliated Facility in Portland. GailO'Connor represented both the AmericanAssociation on Mental Deficiency and theScientific Advisory Board of tho NationalAssociation for Retarded Children.

Our group tried to address itself to thebroadened scope of the new NIHR mis-sion, as Dr. Giannini had asked us to lookat the problem from the total needs pointof view because of her responsibility forinteragency coordination of effort. Ourgroup was particularly concerned withsome areas that impact on preventionthat seem to have fallen outside thepurview of the National institute of Healthover the past decade.

Work was initiated by trying to assess theprogress that had been made in this fieldover the past 20 years during which amajor effort at the national level has beenmounted. Up until 1960 the view of mentalretardation was out of sight, out of mind."The 60's marked the initiation of the firstmajor effort to recognize and confrontmental retardation as a national problemand brought accomplishments duringthat decade. The national network ofdiagnostic and evaluation centers, theUniversity Affiliated Facilities, the mentalretardation Rita Centers, and major stafftraining efforts for both research and pro-fessional personnel were mounted In insti-tutions throughout the country. Near theend of the decade the American publicwas really shocked to learn of the inhumanconditions that were facing literally hun-dreds of thousands of mentally retardedpeople who were warehoused in our largestate institutions. These as well as otherstartling facts set in motion the dominanttrend in this field in the 70'sthe deinsti-tutionalization of these people and theirreturn to the community. The 1970's also

21

marked the fi 1 real recognition of thefull citizenship and legal rights of mentallyretarded people with passage of threemajor pieces of Federal legislation, PL 94-142, 93-112, and 94-13.

So we have made major advances dur-ing the past 20 years; we can preventmental retardation In a few cases; we cancure it in a few cases; and retarded be-havior can now be recognized and signifi-cantly altered or modified through reha-bilitation. But despite these gains it is clearthat the two most sought after goals in the1980s are (1) to prevent mental retarda-tion from oce:urring, and (2) where wecannot do that, to enable persons withmental retardation to live the most satis-factory and socially productive livespossible.

We need, most of all, to emphasizeprevention. Despite the substantial re-search efforts which have been supportedprincipally by the NIH over the past 20years, specific positive mechanisms arestill understood in less than 10 percent ofthe cases and in only a tiny fraction ofthese is there a present primary preventioncapability. However, as our knowledgehas advanced several promising areas ofresearch and demonstration have emerg-ed in which we propose that the Nationalinstitute of Handicapped Research mustcontribute and play a leadership role.

Cultural-Familial Mental RetardationIt is estimated that up to 80 percent of

the total population of the mentally retard-ed reflect no demonstrable pathology.This form of retardation, while substantiallyhandicapping, is usually a mild to amoderate degree. Specific determinantsremain unknown, but it is known to have adisproportionately high prevalence amongeconomically disadvantaged groups inboth cities and rural areas. It has a strikingtendency to run in families and to per-petuate itself from generation to genera-tion in the same family. Clearly, becauseof the numbers involved, no major impactIn terms of prevention can be made with-out addressing the problem of the cultural-familial mentally retarded. We thereforehave proposed that the following researchareas demand special attention in thecoming decade: (a) Investigation of theepidemiology of cultural-familial retarda-tion, (b) Ideological research, (c) Re-search and demonstrations on preventionand amelioration, and (d) Research anddemonstrations on effective and cost-

effective methods of rehabilitation throughservices which impact directly on thefamily as opposed to the IndMdual person.

evaluation and Development of Fo ikwoupPrograms for Early Screening dew High-Risk infants

Many states have screening programsnow to detect phenyiketonuria and con-genital hypothyroidism, but few havedeveloped comprehensive, long-termfollow-ups.

ClinIcal TI10111 of New Medical TechnologyMore than a decade alter the develop-

ment of electronic fetal monitoring andneo-natal Intensive care, there are nodefinitive studies of their efficacy In pre-venting mental retardation, cerebral palsy,or other developmental conditions. Thesenew technologies must be subject tovigorous clinical trial. Research must alsofocus on the development of interdiscipli-nary health care models for adult handi-capped. While the University AffiliatedPrograms provide comprehensive healthcare for developmentally disabled children,no such models have.been developed foradults. In addition to the epidemiology of

far llal retardation, we need moreepidemiologic studies of severely handi-capping biomedical conditions.

Aside from prevention, the other areasof research are In rehabilitation or habili-tationthe behavioral training of thementally retarded. Here our emphasisbreaks down into research needs in theareas of (a) IndMdual intervention withthe mentally retarded, and (b) researchefforts that need to be directed towardcommunity integration.Age Range and Level of Severity

We recognize that though the behaviorof the mentally retarded can be Improvedsignificantly, It is a developmentally dis-abling condition which is likelyto continueindefinitely and require a combinationand a sequence of interdisciplinary orgeneric care, treatment or services whichare of a lifelong or extended duration.

Severity of Mental RetardationOver the past 10 years the predominance

of emphasis, both in the development ofservices and in research support, hasbeen on severe and profound mentalretardation. This disproportionate efforthas come to the point where It has con-cerned leaders in the field. Recently thepresident-elect of the American Association

on Mental Deficiency saw fit to state, "Byall means, let us maintain interest andinvestment in severely and profoundlyretarded individuals, but at the same timelet us rediscover mild and moderateretardation and invest in those levels ofrenewed research interest and necessarypublic support to sustain good researchof high quality." Therefore, all of our rec-ommendations apply with equal emphasisto all levels of severity.

Vocational Preparation or VocationalRehabilitation

We need to develop new and refinedvocational assessment, training, and place-ment technologies and expand demon-strations of these findings. We are veryconcerned with the question of socialcompetence and mental health amongthe mentally retarded, particularly with thenew emphasis on integration of retardedpersons into the local community andaway from the institutions. There has beenlittle effort thus far made in the area oftraining retarded persons for social com-petency. it is well known that the mentallyretarded are subject to a higher rate ofmental, emotional, and behavioral dis-orders (the more obvious forms of mentalillness), but in addition to that emotionally,motivation, etc. serve as Impediments toeffective community integration.

Selkadvocacy and Consumer involvementWe need to increase our understanding

of the role and function of mentally retard-ed persons themselves as participants insetadvocacy and consumer Involvement.

Community IntegrationEfforts that are directed external to the

retarded person are a major area of in-creased attention. Litigation and legis-lation have required the least restrictiveobjective to treatment of the mentallyretarded. However, research demonstra-tions thus far In the movement out of theinstitutions suggest that the continuumfrom the more restrictive environment tothe less restrictive environment is open toquestion. in order to enable retardedpersons to maintain as independent a life-style as possible, we must give researchpriority to defining and empirically vali-dating a sequence of movement frommore to less restrictive alternatives. Weneed to develop program models of leastrestrictive environment, and then we needto show how such models can be translat-ed into practice. The achievement of

22

Independent living and successful com-munity Integration is not possible by deal-ing with the retarded person alone, and awide array of coordinated programs andsupport services which do not presentlyexist must be provided If we expect toreach the objective of least restrictivealternatives and community integration.

Public Awareness, Acceptance andAccommodation

Surveys have shown that the verbal atti-tudes toward mentally retarded personshave Improved, yet there are other indi-cations that public opinion Is not neces-sarily associated with positive behavioralInteractions toward retarded persons. Weneed to increase our understanding ofpublic attitudes.

Our group was quite resistive to comingup with a dictionary of titles of specificstudies. Rather, we focused on emphasiz-ing what we think are the most promisingand critical research areas. We were alsomost resistive to coming up with a cost orfiscal allocation for the areas which weproposed, but are agreed, with tongue incheek, that MR/DD should not be allocat-ed more than ten percent of the annualFederal budget for its plans.

19

Mental HealthResearch Plan

re" 4,

William A. Anthony, Ph.D.Project DirectorBoston UniversityMT Center in Mental Health

20

I want to make essentially two pointssimilar in scope to what the other groupreporters have discussed: (1) the mainthemes that emerged from our informationgathering process, and (2) how we wentabout developing these main themes,that is, the actual process we used togather input from the field.

I want to provide a little bit of history first,and I would like to focus this history on thewhole area of rehabilitation of peoplewith psychiatric disabilities. In other words,why do we need research and trainingefforts in the area of psychiatric reha-bilitation? The answer is really very simple.The reason is because our failures in thiswhole area have been so well document-ed, are so obvious and so well publicizedthat we are now pushed to the point wherewe must start to deal with them. Perhapsa rundown of some of these failures willillustrate my point.

The deinstitutionalization movement thatpromised so much and delivered so little.

Recidivism rates are high and employ-ment rates are low.

Community-based facilities that havebeen set up are often rejected by thecommunity and by the patients that aresupposed to use them. Figures indicatethat one-third to two-thirds of the patientsreferred to community facilities do notshow up; 40-50 percent that show up donot come back after one session.

Traditional treatment approaches thatare used in in-patient settings simply donot produce rehabilitation outcome.

Drug treatment, which was incorrectlyhailed by many as the cure and certainlyas a treatment which would preclude theneed for rehabilitation, simply has notproduced its promises.

The VR system which also deals with therehabilitation of persons with psychiatricdisabilities is showing a decreasing per-centage of people who are severely psy-chiatrically disabled being rehabilitated.

We have researched treatments that wenow know do not work very well. Now it istime to research those things that In factdo produce some positive effects.

With the historical background in mind,let me comment on the process and out-come of our Centers contribution to theNIHR long-range plan. 23

The input ProcessThe process we used to develop these

themes was simplified in one waytherewere no other Research and TrainingCenters in mental health, so there was nopulling or tugging between centers. Wealso did not need a big travel budget tobring everybody together. We did how-ever, use our Centers advisory councilcomposed of a broad-based spectrum ofconsumers, family members, professionals,state mental health directors, VR directors,and others for input. A great deal of Centerstaff time was spent developing andmailing a survey to interested consumergroups, state mental health and VR direc-tors, practitioners in both rehab andmental health, legal advocates, etc. Theseforms were very open ended and weasked the recipients to exert a good bit ofeffort In order to give useful input. They had

"to tell us what some of the research andtraining gaps in the field are, why theseresearch and training gaps are so critical,and If possible, to suggest potential pro-jects which might be able to meet thesegaps. We demanded a lot of our respon-dents, and they came through. Our Centernow has over two hundred returns on theresearch forms and over two hundredreturns on the training forms containingover 900 pieces of information as to whatthe research and training needs in thisfield are.

The Major Research and Training ThemesFrom all this data we outlined what we

thought were the critical themes, i.e., thecritical research and training issues thatneed to be addressed. Some of the majorthemes are:

TrainingOne thing that kept coming up over

and over again was that we are not pres-ently training people in the skills andknowledge of psychiatric rehabilitation.We are not training people In how to do afunctional assessment. For the most part,we are still training them in how to do apsychiatric assessment. We are not train-ing them in how to teach client skills andhow to become good teachers and edu-cators of clients; what we are typicallydoing is training them in the traditionaltherapeutic and treatment approacheswhich research has already shown as notrelevant to rehabilitation outcome. We arenot teaching them how to coordinateand integrate the services in the com-munity based on the client's needs.

Another themerelated to trainingIsthat we need to develop and Implementcurricula capable of teaching client skills,not Just ADL skills, but the skills needed tolive, learn, or work in the community oftheir choice, i.e., self-control skills, parent-ing skills, interpersonal skills, etc. We needto research curricula already availableand determine what is good and what Isnot and develop the curricula that arestill needed.

ModelsWe do not hove replIcable service

models In this field. We have certain pro-grams that seem to show that they canimpact clients better than other programsor agencies or areas. But it is very difficultto get those people to describe in observ-able, repllcable, objective terms what it IsIn fact they are doing that produces thiseffect. We need to get people to researchmodels and then to disseminate them ina way In which they can be replicated inother systems.

RelaHonship Between Physical and Men-tal Health

Can a treatment regimen that focuseson physical exercise, nutrition, and dietproduce effects as good or better thansome of the traditional treatment ap-proaches? What about the person who isdoubly disabled with both a severe physi-cal and mental disability? We need toresearch the type of treatment that personreceives, how accessible it is, and whetherIt is in fact meeting that person's needs. Weneed to look at the area of drug treatment.Most psychiatrically disabled clients whoenter the rehabilitation system have beenor are currently on drugs, yet we knowabsolutely nothing about the relationshipbetween rehabilitation and drug treat-ment. We know things that scare us. Forexample, 30 to 50 percent of the peoplewho are on drug medication should notbe, either because it does them no goodor because placebos would do Just aswell. But we do not know who those 30 to50 percent are, so consequently every-body gets the treatment. We do not knowif a good psychosocial treatment pro-gram that Is replicable and objectivecan allow us to reduce the number ofpeople that are on medication. Can thepsychosoclal program serve as a supportfor the reduction of medication ratherthan vice versa? Can rehabilitation sup-port the withdrawal of medication?

Consumer InvolvementWe also need to investigalt; the whole

role of the consumer and the familymember. They are a tremendously untap-ped resource in the area of rehabilitationof the psychiatrically-disabled person. Weneed to investigate how they can bebetter used rather than abused by thetreatment system.

The Career Development Pattern of thePsychiatrically Disabled Person

We have a career assessment, a careercounseling, a career placement processthat Is routinely done without much inputfrom the person with a psychiatric dis-ability. There are exceptions, but we needto Investigate how to get the person with adisability more involved In that wholecareer process. We need to figure out howto do rehabilitation "with them" ratherthan "to them," as so often happens to aperson with a psychiatric disability.

These are some of the most criticalresearch and training themes that emerg-ed. There were many, many others as weare dealing with 900 pieces of written dataplus all the verbal input received fromrepresentatives in the field.

In summary, let me say this about ourparticular field. There is a lot we do notknow, so we need good research efforts.it is frightening to look at the field and toknow how little of it is based on data. Andalthough there is a lot we do know, we donot use it, and this fact speaks to theneed for training in this area. The thirdpart of the equation Is that there Is a lotthat we do not know but we act as if we do,and that Is even more frightening!

2421

Deafness Research Plan

Hilda S. Schlesinger, M.D.University of California /San FranciscoDeafness MT Center

Although Dr. Schlesinger attended thefourth annual conference she was unableto present on the panel due to illness. Thefollowing is an outline of the DeafnessResearch Plan obtained subsequent toher absence.

22 .

The long range plans for deafnessresearch within NIHR can be subdividedinto (a) Technological Aspects; (b) Cog-nitheepsychosocial Factors; and (c) Demo-graphic Information and Service DeliverySystems. All three of these areas can betraced through the life span of the deafindividual.

In Infancy and Early Childhood

A. Technological Aspects1. Prevention

Further research into etiological fac-tors of early childhood deafness

Research Into genetics of deafnessand genetic counseling

2. DiagnosisRefinement of neonatal testing (crib-

ogram)

Dissemination of information for neo-natal and early childhood diagnosis

Development of a deafness curriculumfor medical schools and evaluation ofits effectiveness

3. Hearing AidsRefinement of technology

Study of cost effectiveness; consider-ation of review by Consumers Union ofhearing aids and other prostheses

B. Cognitive-psycho-social Factors1. Parenting the deaf child

Development of the most effectivesupport system for parents of newlydiagnosed deaf children

Production of standardized informa-tion to be available to parents in writtenand audio-visual form regarding audi-ology, hearing aids, language andspeech development

2. Research on effects of multihandi-capping conditions

3. Antecedents of communicative com-petence

Research into visual and auditorylanguage processing

Research into relationship of lan-guage, speech, lipreading

C. Demographic and Service DeliveryConsiderations

1. Inclusion of demographic data re-garding congenital and prelingualdeaf children Into census figures

25

2. Design of service delivery system co-ordinating medical, audiological andeducational systems

3. Collection of cost figures and data re-lated to medical insurance

During School YearsA. Technological Aspects1. Identification of acoustic and visual re-

quirements for mainstreaming hearingimpaired children

2. Expansion of knowledge about visualprocessing of interpreted material

3. Development of standardized testsand measurements of greater validityand reliability

B. Cognitive-psycho-social Factors1. Inquiry into emotional support to par-

ents. It has generally been discontinuedpast toddlerhood; clinical evidenceindicates that ongoing support is cru-cial to ongoing parent-child interaction.

2. Studies of the cognitive and psycho-logical impact of mainstreaming

3. Studies of language and speech ac-quisition: the effect of bimodal (speechand signs) and bilingual (English andAmerican Sign Language) Input onlanguage skills, academic skills andspeech development

4. Further exploration of the relationshipof language development and read-ing skills

C. Demographic and Service DeliveryConsiderations

1. Planning for the coordination of edu-cational and mental health services tothe school age population

2. Demographic study of multihandi-capped school age population

During Wolk YearsA. Technological Aspects1. Research into acoustic and visual

variables that enhance working en-vironments

2. Studies of noise pollution variables thatdecrease the likelihood of hearing loss

3. Refinement of telecommunications andradio usage

B. Cognitive-psycho-social Factors1. Attitudinal research: clarification of

existing attitudinal difficulties resultingIn deaf unemployment or underem-ployment

Consumer Comments inRelation to RTC ResearchResponsibilities

2. Independent living skills: coordinationof research for successful interventionwith "low functioning" deaf individuals

C. Demographic and Service DeliveryConsiderations

1. Updating of census with reference todeafness - including minority groupmembership

2. Coordination of mental health servicesand accessibility of all adjunct services:halfway houses, inpatient services, resi-dential treatment facilities, etc.

In Older YearsA. Technological Aspects: Effo logical stud-

ies of late onset deafness

B. Cognitive-psycho-social Factors:effects of late onset of deafness (oradventitious deafness at any age)

C. Demographic and Service DeliveryConsiderations

1. Development of mental health services

2. Updating of census data - includingminority group membership

3.. Review of retirement homes for theaged deaf

Boyce Williams, DirectorDeafness and Communicative Disorders

OfficeRehabilitation Services Administration

In the absence of Dr. Schlesinger, BoyceWilliams was invited by Dr. Joseph Fenton,session moderator, to come forth from theassembly and present impromtu remarkson behalf of the deaf community.

26

Something I've heard this morning, andIn years past, concerning your specificresearch responsibilities in RT Centers isthat they often do not relate to peoplewho are profoundly deaf. Why don't youdo something about that? We do haveIwo Research and Training Centers inDeafness now, and we are very pleasedabout that. Nevertheless, an R&T Center initself specializing in a given disability can-not do the whole job. It has to have theinvolvement of all of the activities inresearch and training.

You have heard about Section 504 ofthe Rehabilitation Act of 1973 . . . Well, Ihave threatened Joe Fenton and othersthat when i retire I am going to start somelawsuits If people receiving Federal grantsdo not learn to communicate with deafpeople! And that Includes R&T Centers.Deaf people suffer from mental retardation,alcoholism, dope addiction, mental healthproblems and physical disabilities of allkinds. Therefore, you have here a Jointresponsibility to all become involved inorder to provide at least a minimum ofservices to deaf people.

Last Friday I heard something thatdisturbed me very much, and I think Itshould disturb you too. The Federal gov-ernment, in Its infinite wisdom, is moving toblock out policies In independent livingservices. I am speaking in the interest of1.8 million people who have total oralmost total hearing loss. Many of thosepeople have been deaf since birth or earlychildhood. Their adjustment problems arevery difficult and challenging. Out of that1.8 million my best guess is that 100,000 to200,000 need independent living services.If those federal policies are zeroing in aspecific direction and are not in the bestinterest of deaf people or do not provideenough flexibility so deaf persons canreceive effective services, then we areguilty of a disservice to that population.Independent living services for deaf per-sons must be delivered through training.The handicapping aspects of deafnessdo respond to training. I hopeyou peoplewill help us in this matter and spread theunderstanding that wherever independentliving services are established we mustalso have intelligent and effective servicedelivery to the 100,000+ deaf people whoneed that service. This means that inde-pendent living centers, in order to provideintelligent and effective service delivery,must have a core staff of experts interestedIn serving low functioning deaf people.

23

NARRTC Awards

In AcceptanceHonorable Jennings Randolph (RAW)

The National Association of Rehabili-tation Research and Training Centerschose two outstanding leaders in the fieldof rehabilitation to honor at its FourthAnnual Conference. Engraved plaqueswere presented on behalf of the Researchand Training Centers to the HonorableJennings Randolph and to Dr. William A.Spencer by Dr. Margaret Giannini, Direc-tor, NIHR, and Dr. Joseph B. Moriarty,President, NARRTC.

President Joseph Moriarty, President-Elect John Goldschmidt, and members ofthe National Association of RehabilitationResearch and Training Centers, it is a greatJoy to be here. I am honored to acceptthis award from your organization.

In our Senate Subcommittee on theHandicapped I have been privileged towork with you for many years towards ourmutual goal of bringing about a social,economic and physical environment Inthis Nation that will enable each handi-capped person to achieve his or herpersonal potential. There is yet a long wayto travel to achieve this goal but we havemade progress. I know you will agree withme that the future holds great promise fordisabled people. All of us here share abelief in the importance of research inImproving the quality of life for this majorsector of our population. There Is a com-mon concern, too, in solving the problemsfaced by research programs today: theneed for funding and the need for focus.

Lost Fall I had the honor of cosponsoring,with Chairman George Brown otihe HouseSubcommittee on Sc16.1ce, Research andTechnology, a series of workshops to in-form members of Congress and their staffsof the "state-of-the-art" on technology asit relates to handicapped persons. Thisendeavor was part of an overall attemptto bring together information about thegreat potential for broader utilization ofthis Nation's vast scientific and technologi-cal resources in addressing the problemsof handiCapped IndMduats. These pro-ceedings are now in print, and I am surethey will be useful to persons concernedwIlh rehabilitation technology. I am hope-ful they will prove to be a valuable baseof information for members of Congress infuture deliberations concerning the deci-sions they wM make on appropriations forresearch and training programs to beneMhandicapped persons.

We need to bring to public awarenessnot or* what can be done in the field of

rehabilitation research, but also what hasalready been done. Too many people areunaware of the accomplishments of Re-habilitcrlion Research and Training Centersduring the last decade, despite a decreasein funding in real dollars. You who haveactively participated in these accomplish-ments know firsthand of the remarkabledifference they make to the lives of handi-capped Individuals, of the Increasedopportunities opened up to them; andyou know also of the resulting benefits thataccrue to the Nation as a whole.

Unfortunately, as we all know, moniesappropriated for research are often pain-fully visible to the American taxpayer whilemonies not required because of researchare never counted or brought to mind. Ithas been suggested to me that Congressshould appropriate each yearthe amountof money which it would have had tospend had it not been for the researchsupported In previous years; that thisamount should then be returned to theAmerican public so that people wouldbe more aware of the long-term benefitsof research. Obviously, that is not going tohappen, but it does illustrate the greatneed for making the public more aware ofthe cost/benefit ratio of rehabilitationresearch.

Included in the 1978 Amendments tothe Rehabilitation ActPublic Law 95-602 were major new research authorities.I share your concern, as voiced in testi-mony before the Subcommittee on theHandicapped in November of 1979, overthe lack of efforts to implement these newauthorities. There have been some im-provements in the situation since then: theDirector of the National institute of Handi-capped Research has been appointed,the new Secretary of Education has ap-pointed many of the persons to serveunder her, and members of the NationalCouncil on the Handicapped have beennamed.

Although the staffing problem has im-proved, the money problem has not.Clearly, money will be tight In comingyears as taxpayers continue to questionthe need for federal spending. There isserious concern for the future of researchand development programs. That Is not toquestion the value of such programs, butmerely a warning that the value must beclearly documented and demonstratedand made readily understandable to theAmerican public. Both the Norional insti-tute of Handicapped Research and the

27

National Council on the Handicappedwill play key roles in any future appro-priations for programs to serve handi-capped areas. If these two agencies playtheir roles effectively, and we continue ourefforts, I am confident that the people ofour Nation will respond in a positivefashion to a demonstrated need and ademonstrated benefit.

Again, this award you have given mehas a double meaning because it is pre-sented by my good Mend and fellow WestVirginian, Joe Moriarty. The West VirginiaResearch and Training Center has flourish-ed under his leadership and his tenure aspresident of the National Association ofRehabilitation Research and TrainingCenters has been a distinguished one.I am confident his future contributions toopportunities for our handicapped citizenswill be as significant as they have beenin the past.

Opposite page:

Honorable Jennings Randolph (CW)Chairman, Subcommittee on III.Handicapped, Committee on Laborand Human ResourcesU.S. Senate

In Acceptance

Milani A. Spew*, M.D.President, The Insteule for Itehablleanonand Research, Houston, TexasReda, Medea! Rehabilltalon RtiT CenterSaylor College of Medicine

. . Truly, we could not have honored a

giant taller than Bill Spencer, not only as

a professional, not only as a humanitarian,

and not only as a husband and a father,

but as the wonderful man he is."

Or. Margaret Giannini

am immensely pleased to have this

chance through your honoring me to tell

each and every one of you the pleasure

that I have experienced In knowing you, in

working with and for you, In sensing your

values and commitments and In yoursparing the challenges of our new Re-

search Institute. Many of the successes

you attribute to me are due to my own

associates In Houston, who fortunately,

often offset my own shortcomings and my

prolonged absence.

Most Importantly, I have come to realize

that together the beliefs and the know-

ledge gleaned in the last three decades

In the area of providing a foundation for

a major research effort on behalf of the

disabled person are finally beginning to

become a reality. I wanted to have this

opportunity to personally tell SenatorJennings Randolph that this reality has

followed upon the leadership and thesupport that has been shown by theSenator, his associates, and also his col-

leagues, not only in the Senate but also in

the House . notably John Brademas,

Olin Teague, and many others, The inspi

atlon and the guidance of Mary Switzer

and others who preceded her and nowsucceed her shall now be recognized,

These goals have been most recently,

strongly affirmed by the President of the

United States, I hope that you are truly

proud of what you have helped to create.

As I reflect upon my own experience In

this field, which many In this audience

nurtured and developed and will continue

to do so, one fundamental concept hasemerged; it Is the notion of Inclusion of a

person with handicaps as a full-fledged

member of his or her community, having

the rights and assuming those responsi-

bilities which make our increasing de-pendence upon one another possible In

daily life, As such persons search for

autonomy, they are simply mirrors of any

one of us In ow own particular pursuit of

both meaning and value to our span of

lee, whatever the duration. Whether he or

she Is an elderly person who regains the

dignity that has been earned by a fife of

value or a child facing the opportunity to

enter it, whether survival Is only months or

2629

decades, it means a great deal to the

person and his family, By recognizing and

bringing Into reality the rights ofthe handi-

capped person to be Included In a fully

active life, we thus contribute to socialjustice and also accept the right to be

dIfferenti Such goals constitute one of the

highest aspirations of mankind today the

world or and I think theywIll ilketyendure

far beyond any of us.

I had the opportunity to see a plaque

on the wall at the Georgia Warm Springs

Foundation which has a tilting quote from

an undeliverer4 speech of Franklin Delano

Roosevelt just before he died. It was: 'The

only banters to overcome in meeting the

challenges of the future are the doubts of

today, it Is to have faith and commitment

to realize (them) tomorrow." We are facing

together that tomorrow. We are being join-

ed by the persons we have assisted In this

quest, we cannot fail!

Inscription on Plaque.

The National Association of Rehabilitation

Research and Training Centers presents

its distinguished colleague award to Dr,

William A Spencer, M D., for his untiring

efforts on behalf of research and training

centers and for his decisive leadership in

the establishment of the National Institute

of Handicapped Research

Dr. Margaret GlannInl presents a tribute

to Dr. William Spencer.

Proposed NIHR FederalRegulations Relatingto RTCs

NIHR ProposedRegulations Overview(Capsule Summary)

t1/4.44lit:1 '1:

.,,

2

Moderator - Neal D. Wife, Ed.D.Associate Project DirectorUniversity of ArkansasVocational R&T Center

The purpose of this conference sessionwas twofold: (1 )to bring an updated reporton the status of the NIHR proposed feder-al regulations with particular emphasis onthose which pertain to the RT Centers,and (2) to give members of the NARRTCan opportunity to have direct input intothe formulation of the final official regu-lations which will govern RTC operationsin the future.

Principals in the development and draft-ing of the proposed regulations wereNathan Ed Acree, who has coordinatedthe development of regulations relating tothe total of NIHR, and Dr. Joseph Fentonand Emily Cromar, who have been respon-sible for drafting regulations pertainingspecifically to the RT Centers.

The preparation of these proposedregulations was precipitated by the enact-ment of P.L. 95-602 which, among otherthings, created the National Institute ofHandicapped Research, and by the enact-ment of P.L. 96-98 establishing a newDepartment of Education within whichNIHR is now housed. It is necessary,therefore, that the NIHR proposed federalregulations be consistent with broaderregulations referred to as EDGAR, theEducation Division General AdministrativeRegulations, which were published onApril 3, 1980.

Opposite page: (left to right) Ed Acres,NIHR; Dr. Neal Utile, University of ArkansasUT Center; and Emily Cromar, NIHRaddress the assembly concerning pro-posed NIHR federal regulations.

'44

Nathan Ed AcreeNational institute of Handicapped

ResearchWashington, DC

32

This one-hour oveMew of the history andapproach used in drafting the proposedfederal regulations for the National insti-tute of Handicapped Research highlightedthe scope of input provided from variousfederal agencies and organizations; therole of the new Department of Educationin the outline of regulations; the format forproposals as outlined in the EducationMision General Administrative Regulations(EDGAR); and the purpose of federalregulation, which is essentially to explainin a clear and succinct manner the appli-cation process for securing federal assist-ance or benefits including the method bywhich selection is handled. It was notedearly that all regulations first appear asproposed rules in draft form with cf periodof 30 to 120 days established for comment.

Information was provided on the needfor renumbering and republication ofEDGAR to be tailored specifically for theDepartment of Education, emphasizingthat much of the content material wouldremain the same. Present subparts ofEDGAR were reviewed noting that SubpartB Includes a description of the NIHR andSubpart D relates to selection of criteriaused by peer review groups. Conflict ofinterest, proposed group peer review bynon-feds, and selection criteria were re-viewed in respect to Subpart D. It wasfurther noted that Subpart E stipulatesthe conditions which must be met bygrantees (i.e., regional advisory councils,allowable costs and indirect cost rates).

Considerable attention was devoted tothe area of "definitions" related to dis-ability, noting that the NIHR favors adop-tion of a broad definition such as thatprescribed in Title IV for the NationalCouncil which states that a handicappedperson is one with a physical or mentalimpairment. Here the word "Impairment"replaces "disability" and refers to a con-dition which limits the person in one ormore major life activities. In applying theterm impairment to the proposed regu-lations, the term is further defined througha logical progression from the lowest levelof disability or deficit, through handi-capping conditions, and finally to Inde-pendence as essentially defined by theIndependent Living Research UtilizationProject at TIRR, Houston.

Although originally scheduled for com-pletion and review on April 15, 1980 theproposed regulations have been detainedin the review process and were not yetpublished on the date of this presentation.

29

Proposed FederalRegulations:Rehabilitation Researchand Training Centers

Emily CromarNational institute of Handicapped

ResearchWashington, DC

The R& T Center regulations were still indraft form and were offered for informa-tion and input. All input which conferenceparticipants wished to provide was wel-comed. The regulations are intended tostandardize the rules of the R&T Centergrant program to the maximum extentpossible and to provide general infor-mation on how to apply for a research andtraining grant; how grants are made; andthe general conditions that apply to agrant. The regulations contain the follow-ing sections which address particularaspects of the R&T Center Program.

Activities eligible for assistanceGrants pursuant to this Part will be pro-

vided to pay part or all of the costs for theestablishment and support of RehabilitationResearch and Training Centers to beoperated in collaboration with institutionsof higher education for the purpose of:

(a) Conducting coordinated and ad-vanced programs of research in rehabili-tation and to widely disseminate andactively promote the utilization of findingsresulting from research thereby reducingthe delay between the discovery of newknowledge and Its application in prac-tice; and(b) Conducting training programs (In-cluding graduate training) to assist indi-viduals to more effectively provide reha-bilitation services and to provide training(including graduate training) for rehabili-tation research and other rehabilitationpersonnel.

Types of activities authorized(a) The research to be conducted ateach Center shall be determined on thebasis of the particular needs of handi-capped individuals by utilizing the geo-graphic area served by the Center as onesource for identifying those problemswhich are national in scope. It may in-clude basic research, where related toidentifiable rehabilitation techniques orservice or applied medical rehabilitationresearch, research regarding the psycho-logical and social aspects of rehabili-tation, and research related to vocationalrehabilitation. The Center shall developpractical application for the findings ofits research.

Each separate study or investigationshall have a reasonable relationship to acentral topic or research core area andshall contribute cumulatively to a co-herent body of knowledge for the resolutionof rehabilitation problems.(b) Training programs at a Center shallendeavor to: widely disseminate andactively promote utilization of new know-ledge resulting from research; incorporaterehabilitation education Into all rehabili-tation related university undergraduateand graduate curricula; provide short-term, in-service and continuing educationto improve the skills of professionals,paraprofessionals, consumers, parents,and other personnel Involved in rehabili-tation as related to new knowledge gen-erated through research findings.

(c) The service program componentsshall be developed to achieve the Inte-gration of services, research and trainingnecessary to: provide the direct know-ledge and awareness of the needs ofdisabled persons; provide the linkageand structure to enable a Center to moreadequately and realistically assess theseneeds and to provide a laboratory for thedevelopment, testing, Implementation anddemonstration of methods, techniques,procedures, systems, etc., to respond tothe needs. Grants may include funds forservices rendered by the Center in con-nection with research and training activities.

(d) The three major activitiesresearch,training, and servicesare expected tobe mutually supportive. Specifically, thisconcept calls for research needs to derivefrom service delivery problems; for re-search results to be assessed and appliedin service delivery settings; and for researchresults to be disseminated Through training.

Areas of problems that may be researchedResearch funded under this Part shall

develop and demonstrate the most effec-tive methods and techniques for reha-bilitating disabled persons.

Application proceduresAn eligible applicant who wants to

apply shall meet the application require-ments of the Education Division GeneralAdministrative Regulations (EDGAR) in 45CFR Part 100a (Direct Service Programs)and Part 100c (Definitions) with the ex-ceptions noted in Part 1364.3 above.

Selection criteria used In this programfor Center applications

Grant applications will be reviewed andevaluated against the following criteria:

(a) National Need1. The extent to which the applicant re-flects knowledge of and has analyzedrehabilitation needs with specific refer-ences to persons or agencies to be servedor benefited.2. The extent to which the applicant ex-hibits thorough knowledge of pertinentprevious research and relates the propos-ed research to it.

(b) Plan of Operation1. The soundness of the proposed plan ofoperation Including considerations of theextent to which the objectives are clearlydescribed; are capable of being attained;and are measureabie.

2. Evidence of a sound administrativestructure and organizational mechanismfor implementing and operating a Center.

3. Evidence of support from rehabilitationagencies, from public and voluntaryorganizations, and specific measuresdescribed for achieving a high level ofinteraction between the Center and theseresources in implementing and operatingthe Center.

4. A description of an Advisory Council tobe used in the development and operationof the Center and types of constituents tobe represented.

5. The extent to which the applicantdemonstrates that the Center research willbe effectively utilized and will directlyimprove the affiliated services and will likelybe effectively utilized by other programsfor similar purposes.

6. The extent of provisions made for re-search dissemination.

7. The applicant's plan for programmaticresearch within research core areas.

8. The quality of proposed individual re-search and training projects;

9. The extent of the proposed relation-ship between the research and trainingprojects and the identified research coreCMOs.

10. Evidence that the training projects willbe in consonance with and capable ofachieving training objectives.

(c) Evaluation Plan1. Provisions are made for adequate eval-uation of the effectiveness of the Centerprogram and for determining the extent towhich objectives are accomplished.

(d) Adequacy of Resources1. The extent to which the university withwhich the Center is affiliated has multi-disciplinary rehabilitation resources avail-able that will insure a sound and substan-tial growth of a significant Research andTraining Center.

2. The extent to which the Center candraw upon and coordinate the resourcesand staff efforts of the university and theclinIcal/seMce component to accomplishIts objectives.

3. The adequacy of the facilities andresources available to the Center to con-duct the proposed work.

(e) Budget and Cost Effectiveness1. The extent to which the budget reflectsthe actMtles and the reasonableness ofthe allocation of the resources amongthe actMtles.

2. The costs of the program are reason-able to the government In relation toexpected benefits.

3. The extent of outside support and seMces.

(f) Qualify of Key Personnel1. Project personnel, actual or proposed,are highly qualified and appointmentsof core staff are appropriate.

Matching RequirementsWhile no specific percentage of grantee

sharing is required, grantees are expectedto commit their resources to the supportof activities of the Center. The amount ofparticipation will be determined at thetime of the award.

Length of Center support.The initial application may be proposed

for up to a five year duration. Applicationsfor centers proposing multi-year projectsmust be accompanied by an explanationof the need for multi-year support, a reviewof the objectives and activities proposed,and budget estimates to obtain the ob-jectives in any proposed subsequent year.If an application demonstrates, to theDirectors satisfaction, that multi-year sup-port is needed to carry out the proposedprojects, the Director may, In the initialnotification of grant award for the Center(which shall be for up to a twelve monthperiod) indicate an intention to assist theCenter on an appropriate multi-year basisthrough continuation grants and subjectto availability of funds. Continuationawards will be reviewed annually on anon-competitive basis and approved forcontinuation only it

(a) Funds are available to continue theCenter,

(b) Satisfactory progress has been madeIn implementing the approved work planin achieving the Center goals and objec-tives as indicated by site visits, progressreports and other relevant data.

Purpose and role of Advisory Council(a) Purpose

To insure maximum research respon-

34

siveness to rehabilitation needs, an Ad-visory Council shall be established tofunction as an Integral part of the oper-ational structure of a Research and TrainIng Center. Composed of representativesfrom rehabilitation related public andvoluntary agencies, labor and industryand consumers, including a representa-tive from RSA Regional Office staff, theCouncil shall establish and maintainlinkages between the Center and therehabilitation needs of disabled persons.

(b) RoleThe Council's role Is to assist !It !den*

tying research and training priontfes andto transmit to all concerned the innovativeconcepts and techniques that are 'en-gendered by the Center's research andtraining activities.

(c) AuthorityThe functions of the Advisory Council

shall be advisory in regard to all r^pects ofthe Center's program and functions.

3

NIHR Long RangePlanning

Introduction

Moderator Robed P. Jacobs, M.D.Director of ResearchThe George Washington UniversityR&T Center

Panel members representingthe National instituteof Handicapped Researchdiscuss the Long Range Plan.

N.

We have all been participating In theculmination of many discussions on thenew Institute and how the R&T Centersthemselves can input Into long-rangeplanning. We would like to continue thisdiscussion during this next hour, focusingon some of the other programs in the insti-tute and their long-range plans, Mr. DickLeClair will initially discuss an overview ofthe planning process and then, in theabsence of Mr. George Engstrom whocould not be with us today, will alsodiscuss the topic listed for Mr. Engstrom,Dissemination and Utilization Plan forthe NIHR.

Mr. LeClaire will be followed by Mr. EdAcree who will discuss Management andProject Research, Mr. Paul Thomas, Medi-cal Project Research, Dr. Tom Finch, Tech-nology Research for the Handicapped,Dr. Lee Coleman, Psychosocial Projects,and Dr. Martin E. McCavitt, the Internation-al Program Research Plan.

Overview of the PlanningProcess and Plans

Dick LeClairNational Institute of HandicappedResearchWashington, DC

Since February 1980, the NIHR LongRange Plan has been rapidly developedunder the leadership of the Director of theinstitute, Dr. Margaret J. Ganda

In developing this long range plan,NIHR made a major effort to involve handi-capped IndMduals, voluntary organizationsserving their needs, and Federal and Stateagencies sharing responsibilities or interestsin improving the quality of life for handi-capped persons. Twelve task forces con-sisting of representatives of 30 publicagencies and an equal number of repre-sentatives from the voluntary sector wereorganized to participate in the planningprocess. These task forces consideredneeds and possible research approachesapplicable to the following topical areas:(1) Vocationanducational, (2) Technologyfor the benefit of handicapped IndMduals,(3) Rehabilitation medicine, (4) Mentalretardation and developmental disabilities,(5) Mental illness, (6) Speech and hearingImpairments, (7) Visual impairments, (8) De-livery of services and impact of disability,(9) Psycho-social aspects of disability,(10) international aspects, (11) Research

utilization and dissemination of findings,and (12) Independent Living.

Each task force was required to base itsrecommendations for future research

approaches upon needs thatcould be validated on the

basis of their potential foreffecting improvements inthe lives of handicapped

Individuals. Appropriate documentationwas required, such as ihat available fromthe White House Conference on Handi-capped IndMduals or other reliable sources.In addition, suggestions were requestedfrom approximately 3,000 voluntary orga-nizations, rehabilitation facilities and indi-viduals known to have expertise withrespect to problems affecting handi-capped individuals.

Responses from 111 agencies and indi-viduals were received and analyzed, andas a result many useful suggestions wereincorporated in the Long Range Plan.Some of these responses were particularlyhelpful in the development of researchpriorities and approaches within NIHR.

The Research and Training Centers havebeen extremely responsive to the develop-ment of the Long Range Plan and majorsegments have been received from themedical, vocational, mental retardation,mental illness, blindness, and deafnesscenters. These materials are now beingintegrated into a single cohesive docu-ment which will represent the Researchand Training Centers' portion of the Plan.

Similar sections are being prepared bythe Rehabilitation Engineering Centersand by the Discrete Grant Program forinclusion in the overall planning document.

By the end of May we hope to have adraft of the entire Plan at which time it is ourhope that this Association will designatea select number of representatives to re-view the draft document.

I know that Dr. Glannini joins me inexpressing our sincere appreciation forthe invaluable assistance that you pro-vided in developing this very significantplanning document.

Management ProjectResearch Plan

Nathan Ed AcresNational Institute of Handicapped

ResearchWashington, DC

I am primarily a generalist, having beena rehab counselor way back, and so Istarted on that part of the Plan for whichI had responsibility from the perspective ofa generalist. But before getting underwayI realized I had been given an assignmentrelating to more than management. Dick(LeClalre) had given me a goal and fourobjectives, all of which needed to beworked Into the Plan. The general goalwas to conduct a comprehensive researchand demonstration program to improvethe economic status and all aspects ofthe service delivery system Impacting onhandicapped Individuals. The four objec-tives directed at this goal were (1) todocument the economic Impact of dis-ability and develop ways to reverse anynegative trends, (2) to Identify and utilizethe most effective management and ad-ministrative practices, (3) to determinecurrent problems with the service deliverysystems and Identify techniques for im-proving the quality of service, and (4) toexamine the current methods for formu-lating policy and determine alternatives.

i had a very interesting group of indi-viduals to work with. Dale Hanks andCharlie Weston from the West Virginia DVRprovided the down-to-earth reality neededto insure that what was proposed wassomething needed. Jerry Lorenz and StanSmits representing the NRA Division ofManagement provided the managementviewpoint. Don Harrison from the University,of Michigan Regional Rehabilitation Re-search Institute In program evaluationprovided that viewpoint. Will Massie, DickMelia, and Mike Dolnick provided view-points from RSA.

After working two days on a number ofproblems we Identified in these areas, ourgroup developed a number of recom-mendations as Input Into the NIHR Long-Range Plan, among which were:

Give top priority to the term "economicImpact of disability" through ongoingactivities like those of the University ofChicago invoMng a series of demonstra-tions around the country which look athandicapped IndMduals In the SSA sys-tem (or who may eventually be there).Examine the service delivery system towhich these persons are exposed anddevelop alternative ways to get thesepersons back into the labor market beforethey get into the system. Reverse the trendand In the long-run it will cut down oncosts, but more Importantly It will have a

positive effect on tho quality of life forthese people.

Look at the unemployment rate and Itsimpact on handicapped indMduals. Whenunemployment goes up, generally handi-capped individuals begin to lose theirjobs first.

Study the relationship of the consumerprice index on the real dollar support forthe rehabilitation program to determinewhat Is happening within the Federal-State program.

Examine what business and industry aredoing in the area of Improved manage-ment strategies to determine which tech-niques could be adapted or modified foruse in rehabilitation.

Continue efforts in program evaluation,such as those done at the University ofMichigan RRRI, with an emphasis on howthe state director should approach cut-back management with the leveling off ofappropriations and increased inflationand salaries.

Devetop more information on SimilarBenefits.

Conduct research on a new role for staterehab agencies in becoming advocatesfor handicapped individuals as opposedto concentrating on simply a Status 26.

Study demographic data collected bythe institute to determine the reasons forunsuccessful closures.

Conduct more research in consumerInvolvement. Build on the work of theOklahoma telecommunications projectand the work which has been supportedwith the American Coalition of Citizenswith Disabilities.

Continue research efforts into the prob-lem of reducing counselor paperwork,similar to the Georgia Management Pro-ject, to permit counselors to have moretime with clients.

Establish a "think tank" to do forecasitr.gwork related to policy alternatives whichwill affect the entire program five to ?ehyears from now.

The above are just a few of the highlightswhich are presented in the more compre-hensive plan which was developed by themanagement group.

37

Medical ProjectResearch Plan

J. Paul ThomasNational Institute of Handicapped

ResearchWashington, DC

The medical research program of theNIHR, we believe strongly, requires con-siderably more breadth, scope and res-ponsiveness to effectively do what Is neededIn the physical restoration, functionalappraisal, and improved physical capac-ity areas. When the institute was formedand Dr. Glannini said, "We want to do thePlan and we want It now," I did not viewthat as an ominous experience at all. Wesaw it as a marvelous opportunity to col-lect our thoughts and to really be able tosay what we had been wanting to say overthe past several years. Interestingly enough,Just a few minutes before our presentationhere this morning, Dr. John Goidschmidtpresented to me the medical R&T Centers'Input for the medical rehabilitation/physi-cal restoration section. After scanning Itbriefly I am delighted to tell you that themedical research plan for the Instituteand what the medical R&T Cep ters cameup with Is almost Identical material, Issues,and areas of Investigation. Let me elab-orate for you.

There are two research areas in theInstitute's legislation that automaticallyhad to be dealt with and these are undersection 204(b). Within a list of twelve items,item (b) (3) Is clinical spinal cord injuryresearch and (b) (4) Is end-stage renaldisease research. We naturally have hadto include these in our medical researchplan, and research in these areas will beheightened because of the Congressionalinterest.

In addressing other areas that need tohave emphasis In medical rehabilitation,we thought it only fair to prepare some-thing broad enough to permit us to dowhat was needed and also permit ourmany medical specialty interests to berepresented. Therefore, the first part of themedical R&D Plan is a rather lengthy dis-cussion of issues, problems and prioritiesbased on the process of rehabilitationwhich I find, as I look at the product fromthe medical R&T Centers, Is exactly whatour medical consultants suggested.

We in the medical R&D program havebelieved for a long time that there Is "thedisability of the hour' and that with aheightened visibility and push, research-ers, clinicians, and advocacy groups getinterested and suddenly positive thingsbegin to happen. Therefore, tfAre areseveral categorical disabilities, aside fromspinal cord and ESRD, on which we havespecifically focused in the medical R&DPlan. These Include:

38

Cardiovascular DiseaseIn this area we looked at previous re-

search, at specific plans such as thatdeveloped by the Rehabilitation Commit-tee of the National Institute of Heart, Lung,and Blood Diseases; and also at some ofthe work that other outside consultantshave done.

Bum Rehabilitation ResearchThis Is an area that we have believed In

for a long time and that the rehabilitationcommunity has not properly addressed.Two initial baseline studies are underwaynow which we wish to expand much morebroadly. We have looked at the researchthat has been done nationally and Inter-nationally and have sought top outsideconsultants In the field to tell us where theythink NIHR ought to be going in this area.The Plan reflects some very Innovative andnecessary research in burn rehabilitation.

Severe Head TraumaWe learned that In our spinal Injury

program, the neurosurgeons were observ-ing the incidence of patients requiringrehabilitation from traumatic head Injuryis four or five times that of spinal injury. Wedid not find any agency doing muchabout head trauma rehabilitation re-search here In Washington, nor did we seemuch happening with head trauma in theState-Federal rehabilitation program. Wehave Initiated two definitive, collaborativebaseline studies which are currently under-way and which will serve to provide futureresearch directions.

Multiple Sclerosis (including other neuro-muscular diseases)

This area has not really been addressedin the past, but we feel It is timely. Thenational statistics, economics of the prob-lem, and other Issues at hand really requireus to address MS. Through national organi-zations such as the National MS Societyand their medical advisory groups, throughresearch that Is being done In the field,and through outside consultants we feelwe have a fairly solid plan here.

Chronic Obstructive Pulmonary DiseaseAgain, through scientific and clinical

literature review by staff and consultants,this being the second highest area ofsocial security disability payment, wemust address this area strongly and deter-mine what can be done across the wholeboard from prevention through healthmaintenance.

35

Arthritis and Related RheumatoidProcesses

Good input has been received fromnational organizations, the National ArthritisFoundation, from researchers, and fromthe National Plan of the Arthritis and Meta-bolic Diseases institute, This will open thedoorway to get things started.

A May 1, 1980 Federal Register an-nouncement was developed, and thereare three areas that I have already men-tioned that are included in this announce-ment, I would like to close by highlightingthese areas.

Spinal Cord Injury"To generate new knowledge leading

to the development of innovative andimproved techniques of medical man-agement of spinal cord dysfunction, withemphasis upon the newty-dIsabled patientin the acute medical care phase. Prioritywill be given to those projects that focusupon experimental and evaluative mo-dalities for determination of functionalpotential, the clinical course Includingpatho-physiology of early developingcomplications, and new techniques forthe prevention and treatment of suchcomplications as they affect readinessfor rehabilitation .."

Multiple Sclerosis"To seek new knowledge to the height-

ened understanding of the cause, duration,and severity of the exacerbation of themultiple sclerosis course as it affectspotential for rehabilitation ..."

End -Stage Renal Disease Research"To develop new knowledge through

scientific investigations that lead to theimprovement of end-stage renal diseaserehabilitation services. Priority will be givento those investigations that emphasizehome and otherforms of dialysis methodsincluding parientenile, ambulatory andinnovative hemodialysis techniques."

The medical research program continuesto deliver some excellent results. With Dr.

Glannini's fine support, we have beenable to reflect some of the early work forthe Plan hi the Federal Register announce-ment. Now that we have seen the medicalR&T Centers' input Into the Plan, I feel wehave excellent congruencesomethingthat we con collaboratively move with tobroaden our total medical R&D effort intoa really significant program in the future.

36

Dissemination andUtilization Project Plan

George EngstromNational Institute of Handicapped

ResearchWashington, DC

In Mr, Engstrom's absence, the Dissemi-nation and Utilization Project Plan wassummarized briefly as follows by Mr.Dick LoClaire.

in the 1978 Amendments to the Reha-bilitation Act of 1973, research dissemina-tion and utilization is stressed repeatedly,The results of research must be utilized,and NIHR is strongly committed to achiev-ing this goal.

One aspect will be to encourage R&TCenters to continue to do and expandupon the fine work that is being done,such as the INFORMER, the seminars,workshops, and the large number of RTCpublications. Centers will be encouragedto intensify their efforts in utilizing the resultswith emphasis on demonstrating the re-search techniques and other findings thatare generated by the research program.Training will also have an increasing signi-ficance as a mechanism to prompt results,

Secondly, there will be a substantialeffort devoted to utilization at the NIHRcentral office itself. An expanded infor-mation dissemination program is in theplanning stages and will involve R&T, RECand discrete grants programs. Specializedworkshops in key areas will be sponsoredperiodically with other Federal agencies.Rehab Briefs and state -of- the -art docu-ments will be prepared on major findingsresulting from our research activities. Aprogram of selected demonstrations isalso planned to demonstrate and evaluatenew techniques developed by various re-search programs within NIHR.

Finally, every effort will be made to en-courage the private sector to develop,produce and market aids and deviceswhich are initiated by R&T and REC Centersas part of their research programs.

These are only a few examples of typesof activities that NIHR hopes to promote inorder to ensure that the results of researchare made known to everyone concernedand fully utilized to benefit the habilitationand rehabilitation community.

39

Technology for theHandicapped ResearchPlan

Dr, Tom FinchNational institute of Handicapped

ResearchWashington, DC

The process ihol was followed wilhinrehabilitation engineering k a little differ-ent perhaps than some of you hove previously heard. After looking al the Amend,men!s to the Rehabilitation Act, our groupdecided that rather than plan categorical-ly as we have done In the past, we wouldtry to establish how we might approachthe problem differently, From this II wasrecognized that there are primarily threeareas which need to be addressed: needsassessment, needs addretement, and ser-vice delivery. Rather than referring totopics In terms of cora areas of research,as we have In the past, we decided to lookat the problem from a functional perspec-tive because the legislation slates thatwe should be concerned about the prob-lems of handicapped individuals, primari-ly severely handicapped individuals,

Within the area of needs assessment,we then identified several different topicson which we are developing researchissues. These particular areas will be priori-tized later on in the planning process andare not listed in any particular order ofsignificance at this time. Several crew offocus are associated with each one ofthese functional categories:

MobilityLocomotion, wheelchairs, personal licensedvehicles and public transportation

HousingAccessibility, architectural barrier removal,and appropriate fixtures and furniture

CommunicationReception and expression of informationincluding inter-personal communications,telecommunications, and access to stor-ed information

Functional or Physical RestorationOrthotics and prosthetics, functional elec-trical stimulation, tissue mechanics, bio-mechanics, surgical procedures andequipment, sensory stimulation substitutes,and diagnostic!

EducationSpecialized equipment and training forthose who are going to be providing theservices to our client

RecreationPhysical education

Acihrttles of Daily LivingEnvironmental control systems, medicalself-care, feeding devices, and hygienedevices

40

Wd navel asked oisfiialvall, if Ineso oreinclioinil coo 001104, who will he Ilia pro,

vit lain of care on I who is going to assistus in ihe development of the plan?" WeIlion ruffled our attention not only to ourrepresentatives from the (OWL) engineer,ing center community, but also pulledtogether an Informal interagency cam-nilltou including representatives from theNational Science Foundation, the VeteransAdministration, the Bureau of Educationfor the Handicapped (now known as theOffice of Special Education), the Depart.monk of Transportation and Housing andUrban Development, and basically allFederal programs that sponsor handi-capped research In some way or another.These people came to agree on the cate-gories just identified for you.

The next step in the process was essen-tially to ferret out all the information fromthese particular agencies that had to dealwith technology and research In theseparticular categories. An effort was madeto pull from the committee all researchplanspast, present and futureand co-ordinate those and come to some agree-ment as to what NIHR could do in the areaof technology research. From that, we areIn the process now of identifying specificpriority areas of research that will be pre-sented in the plan.

Who else is concerned in terms of theneeds assessment and needs address-menf areas? Our plan identifies the oppor-tunity for handicapped IndNiduals andfarniLes to participate in the developmentof technology, as well as organizationsrepresenting handicapped persons, prac-titioners (other than those In the rehabengineering community), administratorsfor the State and Federal levels, manufac-turers and distributors, authorizers andproviders (third party payers), and otherresearchers from the medical/social/psy-chological community, etc.

Our particular concern, whjch is alsovoiced in one of the purposes of theAmendments to the Rehab Act, Is to spon-sor and to support research In the areasof stimulation, production, distribution andmarketing of devices and technology toaid the severely handicapped client. ThisIs an area that has long been talkedabout. There is a recognized need to con-tinue to get into this area, but we have notconducted any research on this particularsubject. For the first time, we have built inan opportunity to work with private industryand for private industry to work along with

37

Psychosocial ProjectResearch Plan

us in the development of a technologyplan specifically aimed at the stimulation,production and distribution of equipment.

Concomitant with that is also a planto develop certain evaluation centers oran evaluation component within tech-nology that will allow us not only to eval-uate that material developed by therehab engineering community but also toevaluate devices and technology devel-oped within the private sector. We havenow envisioned a two-way street wheresome of the products developed withinthe engineering community will be sent toprivate industry for evaluation, and rehabwill in turn receive technological devicesfrom private industry which they feel canmeet the needs of severely handicappedpersons. We will be able to do this for thefirst time primarily because of the Amend-ments to the Rehab Act.

We in the planning process also envisiona Technology Advisory Committee whererepresentatives from the private sectorand from universities can sit in, share withus, and review the devices we are in theprocess of developing.

After several meetings, over the last ninemonths, with our Interagency committeeand representatives from the rehab en-gineering community, as well as repre-sentatives from State and Federal offices,the plan now is out for review and com-ments from all sectors. From this responsewe anticipate being able to prioritizecategories within the array previously list-ed and identify priorities within each ofthose categories. The plan will then besubmitted to Dr. Giannid who in turn willsubmit It to the National Council.

IP' ADr. Lee ColemanNational institute of Handicapped

ResearchWashington, DC

What I will do, as most of us have,is describe the process that we wentthrough and then, in effect, read an out-line. Although probably only a small per-cent of this total 60-page report will beincluded in the final NIHR Plan, I feel it is adocument which can be used for thefuture In terms of ongoing planning.

In accomplishing this task I had threemain concerns: (1) to reduce this task tosome workable, manageable job; (2) totry to avoid duplication by determiningwhat the R&T Centers were Including Intheir plans since a very heavy percentageof what you do comes under a definitionof psychosocial; and (3) getting a plandone on short notice. Initially I searchedfor parts that could be eliminated. Fortu-nately, the R&T Centers had taken overplanning In the areas of mental retarda-tion, developmental disabilities andmental health, areas which representa very large part of what Is traditionallyconsidered within the psychosocial area.We will use what the RTCs have proposedin these areas. Unfortunately, we wereworking on parallel tracks and the RTCmaterial was not ready at that early date,so I assume that there is redundancywhich will have to be eliminated.

With Roberta Sadler's assistance weworked from whatever existing documentswere available and benefited very muchfrom exposure to my former office room-mate who was in charge of telecommuni-calicxe, as most of the work was done on thetelephone. We took existing needs assess-ments, got on the telephone and Initiatedan almost endless chain of communi-cation, bouncing ideas off people andgetting their responses. We then organizedthe existing material and parceled it out Insections for people to fill In missing strate-gies. When all the materials were returned,Roberta and I did the compilation.

The document covers quite a bit ofterritory in the psychosocial area, andfrom looking at what has been done overthe years it seems that this area, at leastas far as the Discretionary Grant ProgramIs concerned, has not been researchedextensively. Therefore, we tried to addemphasis to an area which we felt wasextremely important. Most of the researchand much of the service that has been doneIn the field of rehabilitation has concentrat-ed on the physical dimension of disability,and yet we have discovered over theyears that there are still many physicallydisabled IndMduals who do not succeed

through the rehabilitation process or donot make adequate adjustments to IMngin the community. Much of this lack ofactualization of their potential is attribut-able to problems in the psychosocial area

Obviously, we had to start by definingpsychosocial. We proposed that psycho-social factors refer to the matrix of personalvariables (i.e., personality, emotionality,cognition, attitude, behavior) and thesocial variables (i.e., attitudes of family,friends, employers, teachers, etc.) andhow they affect each other or Interact Inrelation to handicapping conditions. Wefelt that these factors can be a function ofthe disability itself and/or contributors tothe adaptive process of the handicappedindividual. In fact, the psychosocial prob-lems of the disabled, we felt, were oftenmuch more debiNtating than the actualphysical or cognitive limitations to theextent that they act as bafflers In keepinga disabled individual from the mainstreamof society.

We looked at the whole area of psycho-social and broke it Into essentially threedifferent categories: psychosocial environ-ments, rehabilitation processes and out-comes, and personal adjustment tohandicaps, disability, and severe chronicillness. A definition, a statement of overallneed, a description of the problems andbackground, specific strategies, andspecific objectives were developed foreach of the three categories. I will describethe categories and list the sub-areasunder each:Psychosocial Environments investiga-tions that pertain to the characteristicsand Influence of the psychological andsocial environments in which the disabledIndMdual lives, Including:

Improving the social environmentExpansion and Integration of rehabili-

tation gains Into social and vocationalfunctioning

The relationship of handicapped indi-viduals to employers and educationalinstitutions

The Involvement of consumers, advo-cates, and self-help groupsRehabllitallon Processes and Outcomes -studies of the psychological influence ofa broadly conceived rehabilitation pro-cess, from primary medical care throughreintegration into society, and of theVarious factors that affect the outcomeincluding:

interaction of the client, the professional,and I environment in the rehabilitationsetting

Psychosocial aspects of rehabilitationengineering

Effects of handicapping conditions onteaming

Predictive measures of adjustment

Assessment of psychosocial functioningIn relation to rehabilitation potential

Psychosocial factors In the relationshipof the health-care and rehabilitation pro-fessional to handicapped IndMduals

The relationship of mental health profes-sionals to handicapped IndMduals

Personal Adjustment to HandicappedDisability In Severe Chronic illness - in-vestigations focusing on the disabledIndMduars personal adjustment, including:

The natural course of and reaction andadjustment to disability

Psychosocial development

Remediation of negative self perception

Psychosocial variables of motivation

Locus of control

Psychological coping mechanisms ofthe rehabilitant

42

International ProgramResearch Plan

11116""""01110..

Dr. Madin E. Mc CavittNational institute of Handicapped

ResearchWashington, DC

40

The International Program within NIHRand its predecessor agencies, RSA andSRS, is not new. It realty goes back for some30 years to the time when we were invotvedIn technical assistance and training. Thiswas followed, of course, by involvementwith the United Nations and its specializedagencies where this program has beenproviding assistance and working onresolutions and special position papers,documenting U.S. concerns in the area ofrehabilitation. In fact, I should point to thefact that it is now the beginning of theIntemational Year of Disabled Persons -1981, which is, in a sense, an outcome ofthose earlier efforts. Our 1981 involvementinternafionally should certainly be signacant.

As long as eighteen years ago theInternational Program was Involved in thepublication of books, one of which describ-ed rehabilitation in 37 countries, and laterin 1964 highlighted rehabilitation of thedisabled in 51 countries.

We are celebrating the 20th anniversaryof Public Law 480 this year, whereby thirteencountries have elected to be a part of acoordinated and cooperative effort. Notonly the Department of Health, Education,and Welfare, certainty including rehabili-tation, but many other agencies within thegovernment have participated.

Public Law 480, the Special ForeignCurrency Program, was followed by anotherimportant law, Public Law 86-610, which Isthe International Health Research Act,authorizing programs for fellowships, semi-nars, and consultations. This was probablythe real backbone of our InternationalProgram because it made It possible forU.S. researchers, scientists, and specialiststo go abroad and participate In and giveguidance to research under Public Law480. In turn, this country invited a numberof scientists to come this way. In fact, wehave been involved with 250 researchprojects In 13 developing countries overthe past 20 years. This program has ledinto something that Is now with us in thenew Act, P.L. 95-602, with dollar support notonty with developing countries, but alsowith the developed or industrializedcountries.

The planning for the Long-Range Plantook all of this history Into consideration.We recognized from whence we came,where we have been, and what the presentstatus is. Recognizing that the P.L. 480program as such is winding down andfunds in most of these countries are notavailable anymore, we are looking nat-

43

uralty in other directions for dollar supportto make this a more realistic approach forcooperative, collaborative efforts whichjoin forces within other countries, andwithin the United States.

With the help and support of Mr. JoeLaRocca, sewing as a consultant, ourapproach to this plan had a forward thrustby inviting in 60 or 70 individuals from fouror five different sectors, talking to as manypeople as we possibly could, not Juststate/regional/federal, but other non-government agencies, all the way to theUnited Nations, the International LaborOrganization, and the World Health Or-ganization. We were trying to "tease out'what It Is that we should be concernedwith on the international scene as wemake our plans for the next five years, andthere has been a remarkable kind ofresponse.

In terms of the scope of the Institute'sInternational Program, this is what we feelshould be the direction of the program forthe future:

Conducting an international rehabili-tation, research, and demonstration pro-gram to develop new rehabilitation know-ledge and methods

Conducting a program for the exchangeof experts in the field of rehabilitation andrelated activities with other nations as ameans of increasing the skills of reha-bilitation personnel

Conducting, with the cooperating coun-tries, a program for the training of theirrehabilitation personnel in the UnitedStates and for the training of personnel incooperating countries

Conducting a program for the collection,translation, publication, and disseminationof international programs, research Infor-mation of significant interest, and theexchange of practitioners and researchersIn the United States and abroad

Providing and enhancing technical as-sistance to and with other internationalagencies and organizations and otherrehabilitation services and the services ofother programs as they relate to handi-capped people In the United States

Providing fellowships to procure theassistance of highly qualified research fel-lows within foreign countries

Providing for representation of the UnitedStates in the World Health Organization,the International Labor Organization, the

United Nations and other special pro-grams, the Pan - American Health Organi-zation, etc.

Preparing position papers on rehabili-tation for use by the Department of Stateand the credal delegations to conferencesconducted by the United Nations andspecialized agencies

Next we developed six or eight principlesgoverning administration of this inter-national Program. Among these it wasstressed that this program must tie in withand be an integral part of the domesticprogram. Also, it must have financing, notonly by our government, but throughshared responsibility with other govern-ments. For instance, the U.S. is getting atremendous number of appeals fromInterest groups from Japan and the Gulfarea. Saudi Arabia was represented herethis week with two or three other groupsand will be coming back in the very nearfuture. Exchanges are under considerationwith the Latin American countries now,and China is certainly on the horizon. NowIs the time when we must "move out."Perhaps at one stage of the program withsome of the developing countries this ex-change was a one-way street. But nownearly every one of the R&T Centers hasbeen involved Internationally in one wayor another. If you are not going out at thistime, certainly you are receiving thescientists as they come this way. The RTCshave done an excellent Job and areappreciated and thanked for their support.

We are right at the verge of moving outInto something very meaningful becausein the new legislation Congress was im-pressed enough with the Special ForeignCurrency Program, using U.S. owned dol-lars in the thirteen developing cou ntries, tocome through and set aside or at leastIndicate that dollars could now be used.There are eight projects now underway,small grants for the most part, but at leastthere Is a thrust. These dollars are not forthe most part going overseas; they aregiven to local agencies who are involvedwith projects in the areas of research,training, technical assistance, exchanged information, and exchange of experts.But the direction is there and we are justscratching the surface in terms of needand what can be done.

I could not he but notice in theWOOER network display the fact thatthe map of the world Is there before uswNh Nags denoting the INFORMIIrs broad

international circulation. You do not haveto pick up December's issue of "Exchang-ing Research Internationally," but lookat any one of your issues and you willfind some international involvement. Per-haps this is another house organ, anotherdirection in which we should be goingto better tell our story in a more mean-ingful and significant way. So I com-mend the INFORMER and its publishers.I commend the organization of the NationalAssociation of R&T Centers for what hasbeen happening in the past. We can useyou and your expertise. Some 300 visitors*Bed with us in the last several years, andwhat do they want to see? Usually theywant to see at least two or three R&T Cen-ters on each visit. So the word is alreadyout there, your Centers are on the map.We do not have to have a thrust or a formalprogram to present that. Your work is al-ready being passed on to those in the field.

We are still just in the planning stage, butwe hope and we think that this programreally has something going, somethingvery meaningful. With your help and assist-ance we can do much in terms of makingthis a meaningful program. With the 1980international Year for Disabled Persons wewould like to be "on the map" both hereand abroad, stating that we have somevery real contribution to make.

44

New Directionsfor the RTCs

Joseph Fenton, Ed.D.Special Assistant to the Director, NIHR

It is always a pleasure to have an oppor-tunity to present an updating of where we,as RT Centers, have been during "the yearthat has been and where it looks like weare going during the year ahead. Let mefire state that one of the most significant"happenings" of the past year has beenthe appointment of the first Director of theNational institute of Handicapped Re-search, Dr. Margaret J. Glannini, andunder her leadership the development ofthe Long Range Plan for the Institute. Inthat regard, I am pleased that we havehad the opportunity this morning to heara discussion of various aspects of theNIHR program plan from key NIHR staffwho have had i:)e opportunity to provideleadership in the development of the Plan.These presentations were purposely plac-ed on the agenda by the Program Plan-ning Committee to enable us to gain anappreciation of the total NIHR programplan and better conceptualize how theRTCs, which is surely the largest programwithin NIHR, can continue to be an Integralpart of the "whole." I am further pleased tonote that as in the past, participants at theannual meeting Include those from thefederal and regional RSA offices, state andcommunity rehabilitation agencies, con-sumes, RTC advisory commiltee members,and other grantees such as the RRRis.

Please note our Special Centers infor-mation Exchange Program display in therear of the room. As It rotates around andaround, the masthead reads "gettingaround for NIHR" and appropriately re-flects the nature of the state-of-the-ad andthe movements and changes that havetaken place In the past several years.However, white there have been manyreorganizations and disorganizations al-most annually within a variety of HEW, SRS,OHD, and RSA structures, changes withinadministration, department Secretaries,Assistant Secretaries, Commissioners, act-ing Directors, etc., the RTC Program hasbeen able not only to survive but alsogrow, thrive and prosper throughout thisperiod. This can only be attributed to ourbeing able to work together to build ameaningful program of research andtraining which has consistently Impactedon the practice of rehabilitation person-nel, rehabilitation methods, and rehabili-tation service systems. As a result thousandsof handicapped persons haVe been help-

ed to achieve their own maximum state ofindependence and productivity.

What are the new directions for RTCs?Where have we been this past year andwhere are we going this next year? As youknow, two Centers are being phased outas of June 30 and plans are underway toestablish four new RT Centers by October1, as follows: a new RTC in deafness, oneon rehabilitation of aged handicappedpersons to be funded collaboratively withthe Center for the Studies of Mental Healthof the Aging in NIMH, a center for inde-pendent It rehabilitation working closelywith RSA, and a second RT Center In men-tal health rehabilitation also jointlyfundedby NIMH.

This past year we have completed thefirst phase of a study to determine thefeasibility of an RT Center for the reha-bilitation of handicapped Native Ameri-cans. This was initiated cooperativelythrough the University of Colorado RTCenter with the Indian Health SeMcesunder contract with the Native AmericanResearch Firm. The first phase Identified theneeds and the complexities that exist indeveloping a workable service system forNative American Indians. The study clearlyindicated that Nathe Americans recognizethe problems and support the need for anRT Center. Further exploration is, however,necessary to determine how to put an RTCenter Into place which will be helpful toover 100 Native American tribes in theUnited States, each with individual cul-tures, and many with a desire for indepen-dent programs. The second phase of thestudy was created to determine how theBureau of Indian Affairs, the Administrationon Native Americans, and the Rehabili-tation SeMces Administration programscan be integrated into an NIHR/IHS R&TCenter effort. Hopefully, this second phaseof the study will lead to a coordinatedplan for a Research and Training Centerfor the handicapped Native Americansthat will be established In FY 81.

The new thrust in the year ahead Is notonly the establishment of new RT Centersto meet new legislative mandates, butalso increased Interagency cooperationand participation of all of our efforts. Weneed to Increase our knowledge aboutother federal agencies that have relatedprogram responsibilities in working withdisabled -persons. Yet Interagency col-!aberration is not new to the RT Centerprograms. Many such efforts have alreadyresulted in more fruitful program de-

velopments and fiscal support. As anexample, the George Washington Univer-sity R&T Center received a grant for $410,000from the Department of Transportation tostudy and evaluate the District of Columbia'sbusses specifically designed for easy ac-cessibility to handicapped persons. Thisgrant Included the development of atraining package for bus drivers and bussupervisors whereby they may gain a bet-ter understanding of handicapped indi-viduals and develop a positive attitudewhich will encourage the utilization ofbus transportation.

The Office of Personnel Mdnagement(the former U.S. Civil Service) is workingwith us in a study of positions in the CivilServices to determine which are occupiedby severely handicapped persons, theextent of success experienced by thesepersons, and adaptations necessary forsuccess In these positions. The ultimateobjective is to determine whether it Is

necessary to change job descriptions toenable more handicapped persons tohave access to a greater number of fed-eral work positions. The potential impactfor Increasing job opportunities In federalpositions is far-reaching, and hopefullyvarious RT Centers will become Involved Inthis study through their regional civil ser-vice systems.

Another opportunity emanating from thePresident's Office In which the RT Centerscan and should become Involved andcontribute substantially to is the BlackCollege initiative. There are over 100historical black colleges throughout theUnited States which can benefit from tech-nical assistance in developing a capacityto better obtain federal, state and localresearch and training grants. A number ofRT Centers have and are working with theblack colleges by establishing exchangeprograms, internships and fellowships. Wewish to encourage creativity on the part ofthe RT Centers In developing helpful, sup-portive relationships with these colleges.

The three vocational rehabilitation R&TCenters have continued their leadershiprole in conducting the institute on Reha-bilitation issues (IRI) program. For severalyears each of these Centers has, In co-operation with the state vocational reha-bilitation agencies, identified VR trainingIssues and needs which are selectedannually by state agency personnel. Thev o c a t i o n a l RTCs p r o v i d e the lead in work-ing with VR to develop training publicationsand packages which are widely distributed

4.6

and utilized by all vocational rehabili-tation agencies. Surely we should considerextending this successful model to otherrehabilitation areas of study utilizing othertypes of RT Centers. As an example, themental retardation R&T Centers can devel-op a process for identifying three mentalretardation or developmental disabilitiesIssues annually and duplicate the modelby developing training packages in theseareas.

The new legislation has broadened theresearch mandate to Include infants,children, youth, adults, and the elderly.The legislation now authorizes Centers toextend their responsibilities or to changecore areas to include these new chatiengeS.

Unique activities have resulted fromsupplemental funding to R&T Centers thispeat year. Many have had national andinternational Impact. As an example, theTexas Tech Center participated in theinternational Year of the Child Program incooperation with the National Associationof Retarded Citizens and the internationalLeague for Retarded by sponsoring aninternational seminar in Puerto Rico whichIncluded Caribbean representatives In aprogram entitled "Retarded Child of Today,The Adult of Tomorrow." As we plan for theinternational Year of the Disabled, we willlook forward to RTCs participation anddevelopment of creative ideas.

Also during this past year the Universityof Wisconsin Mental Retardation Center,In collaboration with the University ofOregon Mental Retardation Center, or-ganized a program In which graduatestudents were partially sponsored In anInternational program of seminars in Egyptand ism!. They also participated In theinternaLiznal Conference on the ScientificStudy of Mental Deficiency held in Israel.This effort resulted In an international ex-change of information and knowledgeand mutual appreciation of programsoffered by the various countries Involved.

The Special Centers Office and theNational Association of R&T Centers needto continue cooperative reiationsh I ps withthe Executive Committee of that Associa-tion and with its Research and TrainingCommittees. Hopefully, during the nextyear we will be able to continue our effortswith the Association's Evaluation Commit-tee to reduce reporting procedures andimplement the task force committee'srecommendations without reducing RTCenter accountability.

As an institute, we must now reestablish

our relationship with the state voca-tional rehabilitation agencies and the RSAregional offices. We also need to maintainthe strength of the RT Center AdvisoryCouncil relationship. This system is time-proven and serves as on excellent resourceand asset to the program. The continuedparticipation of consumers and relation-ships with consumer organizations on RICenter Adviboty Councils is a significantaspect of the program which should bestrengthened. I am proud to state that thevalue of consumer participation in RTCenter program development and parti-cipation on Advisory Councils was recog-nized before It became "fashionable."The va.uable coritribulions that handi-capped persons have made in identifyingresearch and training needs, service de-livery problems and concerns with reha-bilitation methods and services have con-tributed measurably to program pianningand development.

A number of questions must be resolvedduring the coming year. How are we to in-crease the base grants of the newer andlesser funded RT Centers which have beenproductive and have the capacity togrow in a system where they will have tocompete with the resources of IN "biggies"on a competitive basis? What does thelegislation realty mean by authorizing"basic research?" What is really meant by"basic" research? Are we talking aboutcompeting with the National institute ofHealth and other national institutes whosefunding Is one-hundredfold over and be-yond the funds available to NIHR. Care isneeded not to encourage the use of NIHRresearch funds for activities which are theresponsibility of other agencies. We mustalso be sure that NIHR basic researchdoes not become the "dumping ground"for research that has been turned downby other institutes making this an Institutefor funding research which can't "passmuster" by other agencies.

"Prevention" Is also noted in NIHR'slegislation. We need of:silica-flan on whatCongress had in mind when the preven-tion mandate was included. Are we tobe concerned with preventing cancer,arthritis, end stage renal diseases, stroke,myocardial infarctions, and other seriousdiseaies? Are the NIHR's limited resourcesto compete with the NIH's preventionmandate at the Heart institute, Cancer

': :Center, Eye Institute, etc?Of great significance, In a positive sense,the newly established Office of the

Assistant Secretary for Special Educationand Rehabilitative Services. This office willprovide the leadership and opportunitiesfor collaborative program developmentfor children, adults and the aged in edu-cation, habilitation, and rehabilitationresearch.

A word about our information ExchangeProgram, the program launched severalyears ago to implement our mandate todisseminate new knowledge resulting fromresearch findings, is appropriate at thistime. I wish to acknowledge the fine con-tinuing efforts and express appreciationfor our close cooperation and workingrelationship with the Arkansas RT Centerwith Vernon Glenn, Neal Little, and espe-cially with Susan and David Sigman withwhom I work on a day-to-day basis in thedevelopment and implementation of thevarious information Exchange productssuch as the annual Research Directory ofthe Rehabilitation Research and Trainingcenters, the directory of RT Center publi-cations and audiovisual aids, and par-ticularly the INFORMER. I keep tellingSusan that each issue is better than the lastone and that I don't know how we're goingto achieve a better one the next time; yet,somehow a rabbit is pulled out of a hatand tie publication is always better. Butthe formula is not really one of magic. It isone of constant review and evaluation. Asan example, six months ago we askedseveral information experts to offer sug-gestions and recommendations regardingthe format of the INFORMER. As a result wenow have a new format which highlightsresearch and training activities undermajor topical areas as well as acknow-ledging the Centers responsible for eachof the actMtles. Also the. RTC TrainingCalendar now appears in a separatesection which can be detached and cir-culated to all staff. This change cameabout upon learning from state agencyline staff that some agency administrativeoffices were receiving copies of theINFORMER but were not circulating therato all staff. Now the Training Calendar isdesigned so that it can be detachedeasily and circulated. In addition, eachstate vocational rehabilitation agency isnow receMng up to filly additional copieswhich can be forwarded to line staff.

We will also continue to publish the.Research Directory for FY 1980 which willappear shortly after the end of the fiscalyear and will enable everyone to keepup-to-date on all current and proposed

RT Center research. This directory servesnot only to disseminate and aid in theutilization of research findings, but also toencourage collaborative efforts and avoidunnecessary duplication.

We have also arranged for the InformationExchange Program to assume responsibilityfor the proceedings of each annual RTCenter meeting, thereby assuring timelyreporting and early distribution. We furtherperceive the extension of the informationExchange Program to include more com-prehensive coverage and disseminationof all of the NIHR's research related actMtles.

RT Centers continue to bean outstandingmechanism for resolving research issuesand training needs of rehabilitation relat-ed agencies. There is hardly a meetingone attends on the federal, regional orstate level where the RT Centers are notreferred to as a resource for problemsolving in research and training areas. Thevisibility, reputation and credibility the RTCenters have achieved over these pastnumber of years speak well cite program.It is very important that the Centers con-tinue to reflect such achievements in theirannual reports and show the impact ofthe research and the training conductedin a manner which clearly demonstrateswhat the RTCs are doing and how the livesof handicapped persons are being im-pacted. We must continue to documenthow rehabilitation related curriculum inour universities have been enhanced andhow the skills of rehabilitation practitionershave been improved through trainingseminars, conferences and publicationsproduced by the RT Centers. We need tocontinually demonstrate how the invest-ment in rehabilitation has reduced healthcare costs and tax burdens. As budgeteerslook to see where reductions can bemade, we must be cognizantthat this typeof reporting can help not only to maintainour program, but, hopefully, to increaseits capacity.

We can anticipate that the year aheadwill be another with many changes andopportunities for innovations. There is noquestion in my mind that the Centers canlive up to these challenges and continueto be productive and contribute sub-stanfially to all aspects of rehabilitationknowledge in ways never before realized.

47

Group Meeting Reports

RTC Directors' Report

Joseph B. Moriarty, Ph.D., Moderator

The RTC Directors' group basically ad-dressed three things. First was the issue offunding. Just for maintenance of effortpurposes, increases in the 12-15 percentrange are essential. What's more, thelegislative mandate establishing NIHRcontains an ambitious set of new initiativesfor NIHR and the R&T Centers. We feel alittle bit like the quote about being askedto do more and more with less and less sothat soon we'll be able to do everythingwith nothing.

Secondly, there was considerable con-versation at both today's meeting and atthe Executive Committee meeting yester-day concerning the need for ongoingdialogue between R&T Centers and NIHR.A proposal is being formulated whichwould entail a representative group, per-haps a subcommittee of the ExecutiveCommittee, to meet regularly with Dr.Glannini and her staff to review currentprograms' progress being made in achiev-ing program goals, obstacles to progressand the like.

The third major item which RTC directorsaddressed is the matter of getting neces-sary funds to support the Association ofRehabilitation Research and TrainingCenters. Institutional and IndMdual dueswere considered among other things,and It was agreed that this issue needsfurther attention.

RTC Researchers' Report

Marcus J. Fuhrer, Ph.D., Moderator

The Research Committee was struckwith the recognition that long-range re-search planning requires appropriatetime, resources, and sustained effort. Toooften in the past, planning has beendesigned to start from "ground zero"rather than being conducted as a cumu-lative, evolutionary process. We believethat subsequent years' efforts should bedevoted to elaborating, refining, andmaking operational the promising startthat has been made this year. Thereshould be systematic Interaction of agen-cy planners with this country's rehablMationresearchersthose In the RTCs and thoseworking elsewhere. This interactive processshould Include regular colloquia or plan-ning conferences that focus on discretehigh priority problem areas and that havestructured agendas and predeterminedproducts (e.g., position papers, budgetestimates).

It is crucial that the creativity and exper-tise of experienced Investigators are ex-ploited in moving through the planningprocess from the specification of needs tothe formulation of specific research pro-ject plans. This cannot happen If theresearch that is desired is overspecified.An effort should be made instead to stateclearly what are perceived to be the majorissues, problems, and questions. The defi-nition of research strategies and metho-dologies should then be provided byinvestigators with experience In the areasof concern.

We also wish to emphasize that It isimportant in the planning process that theInstitute be as systematic In catalogingcompleted and ongoing research as it Isin identifying areas requiring new efforts.

In our discussions, we noted a numberof problems in the distinction between"applied" and "basic" research that is offer-ed In the draft version of the proposedregulations. We made some progress Indistinguishing these terms more ade-quately, but did not complete the task. Weencourage the Association's members toconsider carefully how these conceptsare treated In the proposed regulationsonce they are published and recom-mendations for revisions are requested.

Participants had the opportunity todiscuss the NIHR Long Range Plan andother areas of mutual interest in fourselected groups: RTC Directors, RTCResearch, RTC Training, or AdvisoryCouncil/State/Federal Representatives andConsumers.

RTC Trainers' Report

Donald W. Dew, Ed.D., Moderator

The RTC trainers established five sub-committees during the past year. Thesesubcommittees were organized to ensureorganizational communication, collabo-ration and cooperation with an emphasison working closely within the NARRTC,NIHR and RSA. Reports from each of thefive subcommittees were as follows.1. Organisational Communication andCooperalion

Linkages have been established withthe Training Committees, the Council ofState Administrators of Vocational Reha-bilitation, the National Council on Reha-billiatio.n Education, the Regional Rehabili-tation Continuing Education Program andthe Regional Rehabilitation Researchinstitute. The purpose of our contacts wasto ensure that trainers within the RTC'swere up- to-date with the current Issuescifecting training organizations associatedwith RSA and NIHR.

3. Codification of TrainingThe RTC trainers are quite concerned

with the number of organizations whichrequire certification for their training pro-grams. At present, by individualty havingto certify trainees for numerous organi-zations, a great deal of trainers' time isbeing utilized by filling out certificationforms and communicating with numerousorganizations. It is felt that some progresshas been made in standardizing some ofthe certification requirements of our re-spective trainees.

3. Allocation of Training MoniesThis subcommittee was charged with

determining how RTC's allocate trainingmonies. Although Centers may handlefunding differently, understanding the pro-cess may be helpful to the trainers at large.

4. Improving Present Reporting ActivitiesThe present method of reporting training

activities, it is felt, could stand Improve-ment. Therefore, this committee is chargedwith exploring each individual centersreporting process, ultimately putting themtogether to help develop some clearrecommendations which may benefitRTC trainers.

5. Training Program EvaluationsWe have been concerned for sometime

with the current methods of evaluatingtraining programs. It was hoped that thiscommittee would make recommendationsrelated to better methods of evaluatingour training.

It was felt by the trainers that the above-mentioned five areas require ongoingattention, and we will need to continue towork on these areas during the coming year,

The Committee discussed the NIHRlong-range plan as related to trainingwhich was submitted by the Training Com-mittee. As a result of this discussion, severalrecommendations concerning additionalareas were made. They included ensuring

that we had consumer Involvement intraining, and the effective use of tele-communications as a means of trans-ferring information.

Finally, the trainers nominated sevenindividuals to serve on the Training Com-mittee for the coming year. These nomi-nations will be forwarded to Dr. JohnGoidschmidt, President of NARRTC for hisconsideration and, hopefully, appoint-ment. They were as follows: Dr. Jean Cole,Baylor Medical Center, Dr. Bob Means,Arkansas Vocational Center, Dr. DonaldDew, George Washington University Medi-cal Center, Dr. Darrell Coffey, University ofWisconsin-Stout Vocational Center, Dr.Mika' Cohen, Boston University MentalHealth Center, Dr. Don Olson, Rehabili-tation insitute of Chicago Medical Center,and Mr. Roger Decker, Emory UniversityMedical Center. The committee also re-commended that Mr. Decker serve ascommittee chairperson for the corning year.

BELOW: Research facully convene In wok-shop session.

Advisory Council,State/FederalRepresentatives andConsumers' Report

Ralph N. Pac IneM, Ph.D., Moderator

Some 35 indviduals convened to discussthe assigned topic of the role and functionof the RTC advisory council and the Inter-action of at least three classes of memberson the council: state agency and federalrepresentatives and consumers. The groupwas composed of state rehabilitationagency directors, advisory council mem-bers, consumers, RTC administrative staff,RSA Central and Regional Office staff, andNIHR personnel.

The group spent considerable time dis-cussing the definition of consumer anddetermining how appropriate consumersmight be identified for council member-ship. It was suggested that the "consumer"be a disabled person who Is not employ-ed by the RTC or any agency employeeconnected to the traditional state-federalrehabilitation network The group reaffirmedthe definition developed at the First AnnualRTC Meeting in Arkansas. In addition, itwas felt that a goal of 20% consumermembership should be aggressively pur-sued for all RTC advisory councils. Becausethere was Insufficient time to explore thistopic in the detail desired, the grouprecommended that the Association con-tinue in its efforts to define "consumer"participation and to develop guidancefor the RTCs.

In discussing the RTC advisory council,the group concluded that a council ismutually beneficial for RTC administrativeand professional staff, the State rehabili-tation agencies and other agencies andorganizations who participate in researchand training activities, especially as theyrelate to severely handicapped IndMduab.The group emphasized that councilscould benefit from: (a) membership ac-cording to the Fenton paradigm (guidancedeveloped and distributed by Dr. JosephFenton, Special Assistant to the Direcjor,NIHR), (b) size that is controllable andmanageable, (c) orientation training forcouncil members, and (d) clearly articu-lating their role as advisory rather thanpolicy-making and decision-making.

With the establishment of the Nationalinstitute of Handicapped Research, andthe transfer of the RSA research programto the institute, the discussion on the roleof federal and state VR personnel wasperceived as Important, if not critical. Themaintenance of linkages between NIHRand RSA and the state VR agencies ispivotal to sound and relevant rehabilitationresearch and training. The group felt thatthere should not be diminution of effort onbehalf of RSA and state agency staff as

they relate to the work of the institute. Itwas strongly encouraged that RSA andNIHR develop a formal working agree-ment that would define their respectiveroles in expanding and improving reha-bilitation research, training and practice.The group suggested that the RTC Asso-ciation could play an important catalyticrole In bringing these organizations to-gether and in fostering cooperation, co-ordination and communication.

The session closed with the group re-viewing the proposed federal regulationsas they pertain to NIHR, especially Researchand Training Centers. Several sectionsprovided encouraciement and comforttoward the strengthening of advisorycouncils and the roles to be played byvarious agencies, organizations and indi-viduals. For example, Subpart D. Section1364b.30 describes selection criteria rela-tive to applications that might competesuccessfully for a RTC grant. Points areawarded the applicant if proof of supportis shown from state rehabilitation agen-cies, public and voluntary organizationsand consumers. Also, points are awardedfor a description of an advisory council tobe used in the development and operationof the RTC. In Section 1364b42, the purposeand role of an advisory council are defin-ed. The discussion group felt that thesebasic regulatory guidelines could serveas the springboard for future action.

Legislative Update

Moderator - John W. Goldschmidt, M.D.Associate Project DirectorNoinnvestem University Medical

R&T CenterPresident-Elect, NARRTC

This session was designed to bringconference participants up-to-date oncurrent and pertinent issues relating tofederal legislation in rehabilitation. Infor-mal discussion followed the presentationsby Patria G. Forsythe and Richard Verville.

OPPOSITE PAGE: Patric G. Forsythe, StaffDirector, Senate Subcommittee on theHandicapped, and Richard Very! lie,Mornay at Law.

Pablo G. ForsytheStaff DirectorSubcommittee on the HandicappedU.S. Senate

52

The greatest concern I have these daysis ionding. It is a problem which is with usall the time, but it is becoming more andmore prominent with the zeal to balancethe budget. You are here during a verygood week because the meetinqs now inthe Senate concem the decisions to bemade affecting programs for the year1981. Everyone is fighting for every dollar,and I have both a personal and profes-sional opinion about that. My professionalopinion is one which says, "Yes, we shouldbalance the budget." My personal qpInionIs one which says, "Rne, but not with moneyfor the handicapped."

As you know there is a new AssistantSecretary for Special Education and Reha-bliitatWe Services, Edwin Martin. I have knownEd for a very long time. He has been welloriented to both the Federal govemmentand research, plus he is a terrific admini-strator. As an in-house advocate he hasalways been a person who manages tohelp his programs survive. That is a distinctasset, particularly in this day and age.

The names for the National Council onthe Handicapped, which were announcedby the President on May 1, have comeover to the Senate. Papers have been sentto Council members requesting appro-priate information, and just as soon as allfourteen members have returned the re-quested information there will be a groupnomination hearing.

Perhaps most of you are wonderingwhat is going to happen to the Depart-ment of Education and how the Nationalinstitute and the research programs aregoing to fare. I think both will fare verywell, but it is going to depend a lot uponthe attention given by the constituencywhich your program serves. I think theresearch program in the Notional instituteof Handicapped Research has essentiallygone unscathed. Yet in a crucial year likethis you need to do all you can to help.You do not necessarily have to have aSenator from your home state on theAppropriations Committee _to start someaction. You can go to 'whomever yourSenator is and ask him or her to talk to theAppropriations Committee about an in-crease for your program. This is a tactic ofwhich most of you know, but perhapsneed to be reminded. Just let me saythat since this increase in funding wasproposed by the Administration and thePresident, I would keep pursuing themembers until I got RI

Legislative Update

Richard %wine, Attorney at LawWhite, Fine and Vend lieWashington, DC

Mr. Verville is Counsel for the AmericanCongress of Rehabilitation Medicine andis this year's recipient of the coveted GoldKey Award from thht organization.

One of the things I can do for you is pro-vide budget Information about the NationalInstitute. First of all, the President presentedthe original budget in January 1980 fortheFY 1981 which begins October 1, 1980,and in that original budget the Institute,which is now functioning at a level of 31.5million, went up in its projected budget forFY 1981 by 5.5 million to a budget requestof 37 million. That represents a fairly sub-stantial increase: almost 20 percent. Therehabilitation services budgets for the VRprogram went up by 36 million in thePresident's original request from a basethat Is already 817 million; that is clearlynot even an Inflationary factor.

Independent living went up in the Presi-dent's original budget by three million(from 15 to 18), exactly 20 percent. Theother programs in rehab stayed at aboutthe same level as Pt 1980 except for thetraining program which came down from28.5 million to 25.5 million, a three milliondollar reduction. This is not the trainingwhich Is part of the Research and TrainingCenters; it Is the separate training program.The program called Innovation and Ex-pansion Grants for special services thestates might want to experiment with, waszeroed out In the President's '81 budget.

So on the whole there were very,very, fewincreases and there were some majordecreases such as training and the inno-vation and Expansion Grant Program. Theonly Increases at all that were of anysubstance were in Independent livingandthe NIHR (about 20 percent) which, com-pared to any of the other programs in theDepartment of Education budget, werepretty big Increases In this day and age.Very few programs received 20 percentIncreases. For example, In the President'soriginal 1981 budget NIHR went up bysomething like three percent. The highestincrease was the Arthritis Institute whichwent up by maybe eight percent. So In

terms of a commitment to programs asreflected In a budget, It was really quitepositive for the NIHR, and I think this Is agreat tribute to Bill Spencer's early work onhow to organize a budget and thosetedious hours he spent lobbying peoplewithin the Administration to support theprogram.

In March 1980, the President revised hisbudget for FY 1981 and proposed a goodnumber of recisions of budget authorityfor the present year. None of these reci-sions are In rehabilitation, but a lot are inthe health area. So the budget authority

changes for the current FY do not affectrehab at alt. But the President did proposerevising his projected budget for 1981 inthe Department of Education with a re-duction in the Institute's budget by twomillion, bringing it down to 35 million dollarsInstead of 37 million (a 10 percent insteadof 20 percent increase).

In terms of how that budget breaksdown, all I can tell you is what the Admini-stration proposes formally to the Congress.The breakdown that was officially trans-muted by the Department of Educationdealing with the institute's 37 million dollarbudget was broken down this way: re-search and training centers would receive17.3 million representing a 1.5 milliondollar increase; engineering centers andengineering projects likewise received a1.5 million dollar Increase and would befunded at 9.1 million; other research pro-jects would be funded at 64 million whichlikewise is a 1.5 million dollar Increase;utilization and dissemination of researchresults would be funded in the Presidents'original 1981 budget at four million whichis a one million dollar increase; and Inter-national support would be kept at thesame level which Is only $100,000. If youadd up all those figures you get 37 million,and you can clearly see that the live mil-lion dollar increase that was proposed Inthe budget was almost equally dividedamong the four major budget lines: re-search and training centers, engineeringcenters and projects, research and dem-onstration projects, and utilization anddissemination. However, you do not haveto be a very knowledgeable mathemati-cian to figure out that if all the Increasesare roughly equal and the bases verydifferent, the percentages will be different.The big percentage increase was obAous-ly In the utilization and dissemination area,the next biggest was In research projects,the third largest was in engineering centersand projects, and the smallest was in R&TCenters (a 1.5 million dollar Increase overa fifteen million dollar base Is only 10percent).

In the revised budget request, whichnow stands at 35 millionwhat was doneto achieve the two million dollar reduc-tion was to basically reduce each pro-gam by the same amount,about $550,000.The RT Centers revised budget for FY 1981is 16.7 million, the engineering centersand projects Is 8.6 million, research anddemonstration projects is 5.8 million, utili-zation and dissemination is 3.6 million and

53

the International support stays at onehundred thousand. Obviously the R&Dand the engineering funds can be supportmoney that goes Into R&T Centers. I havenever actually seen a breakdown of howthat works, but Centers obviously competeand get, I would imagine, a fairly sub-stantial percentage of those projects.

The Congress has had hearings on theoriginal 1981 budget. The revisions cameout in late March and the hearings thathad public witnesses took place right afterthe revisions downward so most of thepublic witnesses were able to commenton the reductions. Your Association wasrepresented' in testimony. The state direc-tors, the. Congress of Rehabilitation Medi-cine, NRA, the Academy of Physical Medi-cine and Rehabilitation, and a couple ofother groups also testified. We had agreedto a 45 million dollar .1981 budget, butsome said that at a minimum do not letthe budget drop below the original 37million dollar request, otherwise we can-not possibly get a new institute, with all thecharges that it has, off the ground. This, Ithink, Is a fair statement. It is absurd to thinkthat with a 10 to 15 percent Inflation rateyou could start much new with a 20 per-cent increase. It makes it more absurdwhen you realize that in 1969 the budgetfor rehab and research was 32 milliondollars. So the purchasing power of theresearch programs is about 50 percentless than it was in 1969.

The appropriations committees are facingthe desire and probably legally imposedresponsibility of balancing the budget. Itwill be legally imposed because Congresssets a budget ceiling in its budget resolu-tions as required by the 1974 Budget andimpoundment Act. The budget ceilingand revenue estimates that the BudgetCommittees in the House and Senatehave come out with now project a bal-anced budget for 1981.. The balancedbudget would probably have enoughroom in It for the President's estimated1981 programs. I do not think there is real-ly a problem here for the NIHR. The prob-lems arise mainly in those programs thatare multi-billion dollar programs, likemany of the income support programsand some -of- the defense procurementPrograrn.g-

But Ida not think the Congress Is goingbe Very willing to put 'large' Increases'e Me budget OW -What. the President

For example, NIHR, whICh iscongre s, Soared In

,

the President's revised budget by a cut-back of three percent, and I think It will bedifficult to get the Congressional Appro-priations Committees to go above thePresident's budget request as revised.NIHR will probably be lucky to get them toput the 37 million dollars that the Presidentoriginally requested in January into theprogram. That will take a lot of work bypeople like you talking with your senatorsand congressmen, particularly those whoare on the Appropriation Subcommitteewhich deals with the Department of Edu-cation's budget.

The training program, too, is really indanger if that program, which has suffereda reduction of 2 million dollars already(30.5 million FY 1979 to 28.5 in FY 1980),gets down to 25.5 as proposed for 1981.There has been a substantial reduction ina budget that has not had increases forprobably ten years. Less and less of whatthere is goes into long-term training in theprofessional disciplines that supply peoplewho provide rehabilitation services, andmore goes Into short-term training, con-tinuing education and in-service trainingactivities with the state VR agencies. I amnot trying to denigrate those three areas,but they have now become close to thirtypercent of the training budget, whereasten years ago they were about five percentof It. The reason perhaps is that the stateagencies used to be able to do thenecessary training out of monies otherthan direct federal training grants be-cause the financial world was easier thenand there were other forms of support. Butas things have gotten worse states havehad to use federal training grants for someof those activates, and that further cuts intothe training done in the long-term area forvarious disciplines. If you look at a ten yearperiod with grants and dollars in what Icail the health-related disciplines (medi-cine, nursing, PT, OT, speech, prosthetics,orthotics), the money has gone downfrom 13.5 million to 9.5, and the grantshave gone down by 30 to 40 percent. Ifyou look at it nationally, it has been aprecipitous decline and that programneeds a lot of support.

One thing I would like to remind youabout is that the Rehabilitation Act Itselfexpires next June 30, so FY 1982 Is the lastyear for which programs are authorizedunder the Act. That means for FY 1983,which begins October 1982, there has to'be .a new rehabilitation act. Hearings willstart next -spring, so you need to be think-

Ing about this.I feel, as many of you know, there Is a

serious problem in being transferred to theDepartment of Education. I think thevalueof it, however, Is twofold in that you havean assistant secretay.level person responsi-ble for handicapped programs and es-sentially only for that. He is a person whomI have known for ten years and is extra-ordinarily able as an administrator and apolitician. You also have added visibility,for there Is a National Council ich canserve to give the area some.real

Compared to some priory Ors thebudget actually looks rather good for'81 even with the revisions. But I think thatthe politics and the bureaucratic prac-tices that I have seen in the, govemmentover ten years are such that it Is going tobe difficult because the constituency thatdrives the Education Department is theNational Education Association. the Ameri-can Federation of Teachers and maybethirdly, the universities. But even more, Ithink, the teachers unions are a factor.And the people running the Department'at higher levels will basically think of theirrole as dealing with education, becausethat is essentially what it Is So you are aservice program In that constellation andyou therefore have some Inherent ob-stacles, due to the thrust of the new Depart-ment, in selling to the Secretary and theUnder-secretary, and her and his immediatestaff the relevance of rehabilitation. Thoseare the people in the Education Depart-ment that really, in addition to the OMB,make the decisions about the program.And those people are all very educationoriented. Some extraordinary strides havebeen made in bridging the gap betweenhealth and education in some areas, sothere is some hope. But I think you mustcontinue to make that Issue very clearbecause there Is going to be some diffi-culty in making the rehabilitation case inan Education Department despite the factthere is an assistant secretary level person,and he is a very good one. The rehabili-tation groups have to make a real strongeffort to keep congressional committees,the Secretary, the Under-secretary andstaff, and anybody else in the. Executivebranch who deals with the EducationDepartment educated to the fact thatthere are a couple of programs in thatDepartment that are not educationprograms.

NARRTC MembershipAssemblyBusiness Meeting

May 7, 1980 - 10:30 a.m.Washington, DC

The meeting was opened by Dr. JoeMoriarty, President NARRTC, with determi-nation that a quorum was present.

Minutes were accepted as written. Trea-surer, Dr. Carmel la Gonnella reported thatNARRTC has received a total of $90.00 incontributions to date. Bank service chargehas reduced current balance to $76A2.NARRTC needs to establish a TaxpayersI.D. Number. Report accepted as read.

Old Business:No items of old business were presented.

Elections:Dr. Marc Fuhrer, Judge of Elections, pre-sented the Nominating Committee report:For President-Elect, Dr. Fred Fay, and forVice-President, Dr. Hank Brammell. Reportaccepted. No nominations from floor andnominations closed. Moved that there becast by the Secretary a unanimous vote ofapproval for candidates as nominated.Motion passed.

Membership. Committee:No report.

Research Committee:Reported that they have presented anupdated draft on R&T Center evaluationto the Executive Committee and Board.Will request a by-law change on composi-tion of Research Committee under new

usiness.

Training Committee:No report.

Legislative Committee:Indicated that much of this Committee'sreport was covered during conference byspeakers. Believe that there is a possi-bility to increase budget from 35 to 37million dollars, but this must be accom-plished in active collaboration with alliedorganizations and must be actively pur-sued in the next two months.

Program Committee:Thanks were expressed by the Presidentand all members present for the outstand-ing wolc accomplished by the ProgramCommittee in such a short time. It was anexcellent conference and appreciationwas expressed to all involved.

Liaison Committee:No report.

New Business:Places and times for future meetings.

-52

Moved that future sites be: 1981, SanFrancisco (in May depending on roomavailability); 1982; Atlanta; 1983, Seattle.Dues: Moved and passed to initiate anindividual dues policy of $10.00 and thatindividual Centers voluntarily contributean Institutional assessment with the amountto be determined by them; that a project-ed budget be prepared; that exhibits beutilized to generate income; and thatother resources such as registration feesfor conferences also be explored.National Council on the Handicapped:The following persons will be Members ofthe National Council on the Handicappedfor the terms indicated:For a term of 1 year.

Nelba R. Chavez of ArizonaNanette Fabray MacDougall of CaliforniaJohn P. Hourihan of New JerseyOdessa Komer of MichiganEdwin 0. Opheim of Minnesota

For a term of 2 years:Elizabeth Monroe Boggs of New JerseyMary P. Chambers of New HampshireJack Genair Duncan of South CarolinaThomas Joe of the District of Columbia

For a term of 3 years:Donald E. Galvin of MichiganJudith E. Heumann of CaliforniaHoward A. Rusk of New YorkJ. David Webb of GeorgiaHenry Williams of New York

By-Laws:The Research and Training Committeerecommended that Article VIII, Section 5of the By-laws be amended as follows:First sentence should read:

"The Committee should consist of up tonine (old seven) members appointedby the President, following nominationof a slate of candidates by the Directorsof Research/Training, in annual assem-bly."

Also, a new sentence to be added:"No Center type should be representedin the majority."

Amendment accepted to be voted uponat next annual assembly in accord withAssociation by-laws.Last item of business was passing of gavelto the incoming President, Dr. JohnGoldschmldt, who adjourned the meet-ing at 12 noon.

Dan Mc Aloes/Secretary

Photo: NARRTC incoming President, Dr.John Groldsdimidt (right) presortsof appreciation to Wiring Presideltr.Joseph Moriarty.

56 53

NARRTC ExecutiveCommittee Meeting

11.

Joseph B. Moriarty, Ph.D.President, NARRTC

Daniel C. McAlees, Ph.D.Secretary, NARRTC

May 4, 1980 - 4:00 p.m.Washington, DC

The meeting was opened by Dr. JoeMoriarty, President NARRTC, with officialdetermination of quorum present and de-velopment of agenda. Items presented asagenda items were (1) mailgram fromDr. Margaret Giannini; (2) NIHR long-termplanning; (3) congressional appropria-tions; (4) report of NARRTC Research Com-mittee; (5) mechanics and content ofBusiness Meeting, i.e., elections, futuremeeting sites for NARRTC conferences, by-law changes, dues, committee appoint-ments, etc.

hem : Mailgram from Dr. Gianniniit was felt that the mailgram indicates

that carry-over of monies for on-goingprogram activities is acceptable, how-ever, grant awards and comments ofother NIHR officials to date do not appearto reflect this. Thus, there needs to be aclarification as to whether these carry-over monies are to be used for supportingon-going program activities or whetherthey must be applied to new initiatives.The Executive Committee goes on recordthat their interpretation and understand-ing is that carry -over monies can be usedfor the purpose of supporting continuingprogram activities and that the mailgramis clear on this issue. If the NARRTC officersfind a differing interpretation during dis-cussions with Dr. Giannini and other NIHRofficials during the conference, they willso notify the membership.

The Executive Committee also discussedtheir interest in providing input to NIHRregarding such issues as how funds aredistributed, how new initiatives are deter-mined and implemented, establishmentof new R&T Centers, etc. The ExecutiveCommittee felt it was critic/3i to continuallyreinforce the center netw ork concept andprogrammatic research k oroject research.

It was moved and passed that theExecutive Committee direct the Presidentto request bi-monthly meetings with Dr.Giannini for the purpose of discussingissues such as the above.

General discussion that followed broughtforth the following conclusions (1) thereis a need to develop a paid NARRTC staffposition to provide a presence in Washing-ton; (2) there is a need to develop position(issue) papers and collate/combine exist-ing NARRTC papers into an on-going com-prehensive position statement (rationale)for the R&T network concept; (3) there is a

NARRTC Board ofGovernors Meeting

need to encourage the appointment of aNIHR Deputy Director wfio is knowledgeableand experienced in the R&T movement;(4) there is a need to create an archiveof R&T papers, minutes, committee reports,etc. from the past which is kept current.Dan McAlees was requested to initiate thisactivity.

Item II: NIHR Long-Range PlanningSince the primary thrust of the confer-

ence was the NIHR Long-Range Plan, itwas felt that extensive discussion was notappropriate at that time. It was noted thatthere have been very fine submissions tothe plan from all aspects of the RTC net-work. The final organization and format ofthe plan are unknown at this time. A con-sultant has been employed by NIHR SpecialCenters Office to assist in the final pre-paration of all RTC input.

It was moved and passed that theNARRTC President advise Dr. Giannini thatwe request a separate R&T component inthe NIHR plan that reflects the program.matic nature of R&T research.

Item III: AppropriationsAppropriations last yearwere 31.5 million.

The President is currently requesting 35million. Other groups (NRA, etc.) are sup-porting a 45 million request. We shouldwork hard for no less than the 37 millionoriginally requested. President Joe Moriartydiscussed testimony he gave before Con-gress. This testimony is in writing for thosewho would like to review it. Finally, indi-vidual center directors will be assignedspecific congressional representatives tovisit while in Washington for the conference.

Item IV: Report of Research CommitteeThis is an update of the 1978 report of

the Research Committee. The report wasaccepted by the Executive Committeeand recommended for approval by theBoard with the provision that any personwho has comments will be able to presentthem to a scheduled meeting of the Re-search Committee during the conference.The Research Committee will make anychanges it deems appropriate based onthis input and the plan will then be passedon to NIHR via the President.

Item V: Business MeetingIt was determined that the mechanics

d the Business Meeting regarding elections,committees, by-laws, meeting sites, etc.were prepared; thus, discussion focusedon Association dues, In order to °adorn-plish the goals of the NARRTC, monies

have been and will need to be used fortravel for testimony, correspondence, post-age, stationery, secretarial assistance,phone, payment to legislative consultant,duplication, etc. The Executive Committeerecommended to the Board of Governorsthat an IndMdual dues policy be institutedby NARRTC in the amount of $10.00, asprovided in the by-laws of the Association.

Meeting adjourned 7:30 p.m.

Dan McAlees/Secretary

May 5, 1980 - 5:00 p.m.Washington, DC

Meeting opened by Dr. Joe Moriarty,President, NARRTC. It was determined thata quorum was present. Minutes were ap-proved as written. Treasurer, Dr. CarmellaGonnella reported that NARRTC has re-celved a total of $90.00 in contributionsfrom the Executive Committee in 1979.Current balance is $76.42. NARRTC needsto establish a Taxpayers I.D.1 Number.Treasurer's report approved as presented.

Old Business:No items of old business were presented.

New Business:Extensive discussion of the 1.2 million

dollars being made available for newinitiatives occurred. To be eligible for thesemonies a proposal must demonstrate anew initiative, not Just maintenance orexpansion of current activities. The needto ensure cooperation vs. competitionwas stressed in the efforts of the Centers tosecure additional dollars.

Carry-over monies were discussed withthe consensus that they could be utilizedfor continuing program actMtles and thatall requests for carry-over monies shouldbe accompanied by a sound rationalefor utilization other than to offset inflation.

NIHR reimbursement of established uni-versity overhead rates was discussed withwidely varying opinions expressed. Presi-dent-Elect Dr. John Goldschmidt wasrequested to establish a committee torecommend a NARRTC position on re-imbursement of established overheadrates for transmittal to NIHR.

Regarding dues, the Board recommendsby motion to the NARRTC membershipmeeting that IndMdual dues be establish-ed, at the rate of $10.00, and that voluntaryinstitutional dues/fees/contributions berequested (dollar amount to be establish-ed by each IndMdual Center) for thepurpose of supporting the actMtles ofthe Association.

The Board also accepted by motion therecommendation of the Executive Com-mittee to request bl-monthly meetingswith Dr. Giannini for the purpose of provid-ing NARRTC input to NIHR policy determi-nations. (It was recommended that theelected officers of NARRTC represent theAssociation at these meetings.)Meeting adjourned 6:30 p.m.

Dan McAlees/Secretary

ConferenceHighlights

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OPPOSITE PAGE: Vocalist Donna Egged, husband Todd, and canine companions Vista and Alice delight banquet guests.TOP: 410 to right) Honorable Jennings Randolph, Chairman, and Ms. Patric G. Forsythe, Staff Director, Subcommittee on theHandicapped, U.S. Senate; and Joseph Fenton, Ed.ln-Speelal Assistant to the Director, NIHR. BOTTOM: The annual meetingpresents an opportunity for Informal interaction.

6057

TOP: (left to right) Drs. William A. Spencer, Project Director, and Marcus J. Fuhrer, Director of Research, Baylor College of

Medicine RIM Center; and Dr. Neal D. LNIte, Associate Project Director,iinlversily of Arkansas REIT Center. CENTER: (foreground -

left to John D. Collins and James Ellenbing participate In consumer workshop. BOTTOM LEFT: (lotto ugh?) Dr. Jorge C.

Rios, Chairman, Depahnent of Medicine, The George Washl University Medical Cnter, dnd Dr. John Groldschmidt,Associate Project Director, Northwestern University Medical RlisT Center. BOTTOM RIGHT:Ms. Paida O. Forsythe and Dr. Fred Fay

exchange views on federal legislation.17'

' t.S I, 6 6J_ S I

6 .6, II S

1

4.

;!.

MOVE: RT Center displays highlighted research and training activities from around the countryin a variety of formats includingprint media and audiovisual productions. Conference participants had access to materials reflecting medical, vocational,mental retardation, deafness, mental health, and blindness rehabilitation projects throughoutthe 21/2 day meeting. The NationalRehabilitation Information Center (NARIC) from Catholic University, Washington, DC; REHAB BRIEF from the University of Florida(RRI), Gainesville; and the NIHR Information Exchange Program from the University of Arkansas (RTC) were also on display.

62 59 ,

Conference ProgramCommittee

7 A'Irene Tamagna, M.D.Project DirectorThe George Washington UniversityMedical R&T CenterChairperson, Conference ProgramCommittee

Donald Dew, Ed.D.Director of TrainingThe George Washington UniversityMedical R&T CenterCoordinator, Conference ProgramCommittee

4.4

Planning Committee members (L to R) Attamont Dickerson, Jr., Dr. LeRoy Spaniol,Dr. Don A. Olson, Dr. John M. Cobun, Dr. Joseph Fenton, Nancy Floyd (R? secy.),Dr. Robert P. Jacobs, Dr. Donald W. Dew, and Dr. Irene Tamagna (facing group). Notshown: Dr. Ralph Pacinelli, Vernon Hawkins, and Liz Minton.

Program CommitteeDr. Irene Tamagna, ChairpersonDirectorThe George Washington University

Medical R&T Center

Dr. John CobunAssistant State SuperintendentDivision of Vocational RehabilitationMaryland

Dr. Donald W. DewDirectorTraining and Research UtilizationThe George Washington University

Medical R&T Center

Attamont Dickerson, Jr.CommissionerDepartment of Rehabilitative ServicesVirginia

Dr. Joseph FentonSpecial Assistant to the DirectorNational Institute of Handicapped

Research

Vernon HawkinsActing ChiefBureau of Rehabilitation ServicesDistrict of Columbia

Dr. Robert P. JacobsDirector of ResearchThe George Washington University

Medical R&T CenterElizabeth B. MintonDirector of TrainingWest Virginia University Vocational R&T

Center

Dr. Don A. OlsonDirector of Education and TrainingRehabilitation Institute of ChicagoNorthwestern University Medical R&T Center

Dr. Ralph N. PacinelliRegional DirectorRSA/OHDS, Region III

Dr. LeRoy SpaniolDirector of ResearchBoston University Mental Health R&T Center

63

Conference Participants

Wellies J. Abe deResearch and Evaluation SupervisorHelen Keller National CenterSand: Point. New York

AiwaNatonal IMOLAI of Handicapped

ResearchWashington, DC

N OW' W. Ara UdaRehobililation Insteuhr of ChicagoNorthwestern University RAT CenterChicago, Illinois

Or. Sheila H. AkabesDirectorRegional Rehabilitation Research

InstituteColumbia University School ci Social

WorkNew York, New York

Pellicle B. AlasondsrAdministratNe ManagerThe George Washington University

RAT CenterWashington. DC

Thomas P. Anderson, M.O.ProfessorUniversity of MinnesotaMinneapolis, Minnesota

Wiliam A. Anthony, Ph.D.DirectorBoston University RAT CenterBoston, Massachusetts

Joseph AtdistonoChief Physical TherapistThe George Washington University

Medical CenterWashington. DC

Kathleen ArnesonRehabilitation Services Administration/

HEWWashington. DC

Ahem AntganChief Speech PathologistThe George Washington University

Medical CenterWashington. DC

Gory T. NW, Ion, Ph.D.Proressor and Director ci TrainingUniversity of Minnesota RAT CenterMinneapolis, Minnesota

Dr. Edward J. LustDirector ci Rehabilitation ServicesDepartment ci Human ServicesOklahoma City. Oidahoma

Thomas S. Baldwin, Ph.D.DirectorUniversity of North Carolina RAT CenterChapel Hilt North Carolina

Anne 4harie BonySr. Physical TherapistThe George Washington University RAT

CenterWashington. DC

Jaime M. Nina* lee, M.D.Representative. Regional Advisory

CouncilEmory University RAT CenterManta. GeorgiaGerard J. Bombers" Pisa.DirectorTexas Tech University RAT CenterLubbock. Texas

Dr. Martin IledrovrixAmerican Foundation for the BlindNew York, New Your

IIMMMeN, M.D.DirectorUniversity ci Colorado RAT CenterDonor, Colorado

Dr. Harold F. BrIghlProvost and Vice President for Academic

MainThe George Washington UniversityWashington, DC

Wilding B. Brinkley, M.D.Chief Medical °MeerRehabilitation Services AdministrationWashington, DC

Arlene BrownThe George Washington University RAT

CenterWashington. DC

Philip L. Browning, Ph.D.Associate DirectorUniversity ci Oregon RAT CenterEugene, Oregon

Andrea CaseyCoordinator of Training and Research

UtilizationThe George Washington University RAT

CenterWashington. DC

D r. Wu S. ChluDirectorPhysical Medicine and RehabilitationThe George Washington University

Medical CenterWashington. DC

lea= S. CoeRehabilitation Engineering CenterUniversity of Virginia School of MedicineCharlottesville. Virginia

DIMON D. Coffey, Id.D.Director of TrainingUniversity of Wisconsin-Stout RAT CenterMenomonie, Wisconsin

Mikal Cohen, Ph.D.Director ci TrainingBoston University RAT CenterBoston. Massachusetts

Jean A. Cole, Ph.D.Director ci TrainingBaylor College of Medicine RAT CenterHouston. Texas

D r. Les ColemanNational Institute of Handicapped

ResearchWashington, DC

John D. Collins. IIIConsumer RepresentativeAlexandria. Virginia

Paul M. ConnollyAdministratorTufts University RAT CenterBoston. Massachusetts

Paul J. Corcoran, M.D.DirectorTufts University Rill CenterBoston. Massachusetts

Emily CromorResearch and Training AssociateNational Institute ci Handicapped

ResearchWashington. DC

William A. Crunk, Ph.D.Director of TrainingUniversity of Alabama in BirminghanY

RAT CenterBirmingham, Alabama

Thomas CserthiskyResearch SpecialistUniversity of WisconsinStout RAT CenterMonomonic, Wisconsin

J. Robin DeAndrade, M.D.DirectorEmory University RAT CenterAtlanta, Georgia

Boger DeckerDirector of TrainingEmory University RAT CenterAtlanta, Georgia

Dr. Donald W. DewDirector of Training and Research

UtilizationThe George Washington University RAT

CenterWashington, DC

liclEh H. DoleneeBureau of Rehabilitative ServicesWashington. DC

Nancy &mewsAdvisory CouncilBoston University RAT CenterLaurel, Maryland

Jack DuncanNotional Rehabilitation AssociationWashington. DC

James IllenburgMember, Advisory CouncilBaylor College of Medicine RAT CenterHouston. Texas

Dr. March endersAssistant DirectorPhysical Medicine and RehabilitationThe George Washington University

Medical CenterWashington, DC

R. William English, Ph.D.Associate DirectorUniversity of Oregon RAT CenterEugene, Oregon

Georg* EngstromNational institute of Handicapped

ResearchvVashington. DC

Mills A. EthridgeDirector, Training ProgramNotional Association of the DeafSliver Spring, Maryland

Fred Fay, Ph.D.Associate Project DirectorTufts University RAT CenterBoston. Massachusetts

Joseph Fenton, Ed.D.Special Assistant to the DirectorNotional Institute of Handicapped

ResearchWashington, DC

Dr. Tom FinchNational Institute of Handicopped

ResearchWashington. DC

Michelle FineResearch DirectorColumbia University School of Social

WorkNew York. New York

Philip R. Fine, Ph.D.Associate Professor and Director of

ResearchUniversity of Alabama in Birmingham

RAT CenterBirmingham. Alabama

Pahlok J. Flanigan, Ph.D.Associate DirectorUniversity of Wisconsin RAT CenterMadison, Wisconsin

Tim FlaCottagenitirnMaryland

Vilbed I. Fardyim, Ph.D.Director of ResearchUniversity of Washington RAT CenterSeattle, Washington

Pakia G. FOGylheStaff DirectorSubcommittee on the HandicappedWashington, DC

Richard A. FOuldsDirector of Rehabilitation EngineeringTufts University RAT CenterBoston, Massachusetts

Marcus J. Pulver, Ph.D.Director el ResearchBaylOr College el Medicine RAT CenterHouston. Texas

Donald I. Galvin, Ph.D.DirectorUniversity Center for International

RehabilitationMichigan State UniversityEast Lansing, Michigan

Margaret J. Olanninl, M.D.DirectorNational Institute of Handicapped

ResearchWashington, DC

John 0. Olanubos, Ph.D.Senior Psychologistinstitute of Rehabilitation MedicineNew York University Medical CenterNew York. New York

Vernon L Glenn, Id.D.DirectorUniversity of Arkansas RAT CenterFayetteville, Arkansas

Gerald GoldbergPresident Handicapped Advisory

CommitteeU.S. General Accounting OfficeWashington, DC

John W. Goldschmidt, M.D.President, NARRTCAssociate Medicol DirectorRehabilitation Institute of ChicagoNorthwestern University RAT CenterChicogo. Illinois

Cannella Glonnolia, Ph.D.Associate Project Director and Director

of ResearchEmory University RAT CenterAtlanta. Georgia

Sandra GonzalezResearch AssistantThe George Washington University RAT

CenterWashington,] G

Ben GrinsNational institute of Handicapped

ResearchWashington, DC

Mary GunzburgThe George Washington University RAT

CenterWashington, DC

Barbara A. HallCoordinator el TrainingUniversity of Alabama in Birmingham

RAT CenterBirmingham, Alabama

Andrew L Halpern, Ph.D.()WinterUniversity of Oregon RAT CenterEugene, Oregon

%Ten NOMIllon, M.D.Director of ResearchNorthwestern Unnersily RAT CenterChicago. INinols

Illy HonigDirector. Vocational Rehabilitolion

EducationRehabilitation Institute of ChicagoNorthwestern Unnerilly RAT CenterChicago, Illinois

Ormond W. Nemnann, M.D.Chairman. Regional Advisory CouncilThe George Washington University RAT

CenterWashington. DC

Paul R. Willman, Ph.D.Assistant Dean, School of EducolionUniversity of Wisconsin-StoutMenomonie, WisconsinCurls Hidings, Jr.Protect AdministratorDeportment of Rehabilitation SeMcesWoodrow Wilson Rehabilitation CenterFisherrANe. Virginia

Rows Ile ingenileChief Occupational TherapistThe George Washington University

Medical CenterWashington. DC

Dr. Saban P. JacobsDirector of ResearchThe George Washington University RAT

CenterWashington. DC

Dr. Mary A. JansenMight State UniversityDayton. OhioWilliam F. JohnsonTraining/Media SpecialistUniversity of Wisconsin -Stout RAT CenterMenomonie, Wisconsin

IX McCoy JohnsonRagland Representative for Research,

Region IliRSNOHDSPhiladelphia. Pennsylvania

Ore C. Karam Ph.D.Director of Clinical ServicesUnbars My of Wisconsin RAT CenterMadison, Wisconsin

Rally libleipp, Ph.D.Director of TrainingTemple University RAT CenterPhiladelphia. PennsyNania

hided° J. Kollar, M.D.DirectorUniversity of Minnesota RAT CenterMinneapols, Minnesota

Or. Carl J. tango_Vice Preslastnt for AaministiatiOn and

ResearchThe.George Washington UniversityWashington. DC

Olen WilkeNallonal institute of Handicapped

*PesachWashington, DC

Judas F. Lehmann, M.D.

Unarm* of Washington RAT Center.Seditle, Wash ingtan

Dr. Pied LeonardAssociate Dean for ResearchThe George Washington University

Medical CenterWashington, DC

Dr. Craig W. UnebaughResearch InvestigolorThe George Washington University RAT

CenterWashington, DC

Dr. Donald C. Unkowskithe George Washington University RAT

CenterWashington, DC

Neal D. Little, N.D.Associate DirectorUniversity of Arkansas RAT CenterHot Springs, Arkansos

Nan Chin UuRehobilitolion Speciolist/ResearchDepartment of Economic SecurityDivision of Vocational RehobilitotionSt. Paul, Minnesota

Kathleen E. Lloyd, M.D.Medical OfficerRehabilitation Services AdministrotionWashington, DC

Ranth K. Majumder, Ph.D.Director of ResearchWest Virginia University RAT CenlerDunbar, West Virginia

Kalisankar MonthDirector, Job Development LobThe George Washington University RAT

CenterWashington, DC

John N. Man, Ph.D.Director of ResearchUniversity of Arkansas RAT CenterFayetteville. Arkansas

Edwin W. Marlin, Ph.D.Assistont Secretory-designote for Special

Education and RehabilitotNe ServicesDeportment of EducationWashington, DC

Terry MartinResearch AssistontThe George Woshington University RAT

CenterWashington, DC

Diane Mal aceProject CoordinatorRegional Rehabilitation Research

InstituteUniversity of FloridaGainesville, Hondo

Daniel C. McAirws, Ph.D.DirectorUniversity of WisconsinStout RAT CenterMenomonie, Wisconsin

Larry McCarron, Ph.D.Director of ResearchTexas Tech University RAT CenterLubbock. Texas

Dr. Marlin McCavIllNational institute of Handicapped

ResearchWashington. DC

Barbara A. McHughEducation ConsultantRehabilltalkm Program OfficeUniversity of North Corofina Medico!

SchoolChapel Hot. North Carolina

Iheiton W, MainlandChairman, Advisory CouncilEmory University RAT ConferAtlanta, Georgia

Bob Means, Ph,D,Director or TrainingUniversity of Arkansos RAT CenterHot Springs, Arkansos

Fredrick I. Meru, Ph,D.Senior Research/Associate ProfessorUniversity of WIsconsin.Sloul RAI ConferMenomonie, WisconsinElisabeth I. MintonDirector of TrainingWest Virginia University RAT CenterDunbor, West Virginio

Situ MaraReseotch InstructorWest Virginia University RAT CenterMorgonlown, West Virginia

David A. MolinaroTraining AssociateWest Virginia University RAT CenterDunbar, West Virginia

Joseph IL Moriarty, Ph.D.DirectorWest Virginia University RAT CenterDunbar, West Virginia

Andrea MorrisRecreation TherapistThe George. Washington University RAT

CenterWashington, DC

James L MuellerResearch AssociateThe George Washington University RAT

CenterWashington. DC

Dr. John I. MuthardDirectorReglonol Rehabilitation Research

InstituteUniversity of FloridaGoinesville, Florida

Penelope MyersResearch ScientistThe George Washington University RAT

CenterWoshington, DC

S. Arlene Nicooll, R.N.Clinical DirectorUniversity of Colorado RAT CenterDenver. Colorado

C. Eseo Obermann, Ph.D.Choirman, Advisory CouncilUniversity of Minnesota RAT CenterMinneapolis. Minnesota

Dr. Dennis S. O'LearyDean for Clinical AffairsThe George Washington University

Medical CenterWoshington, DC

Don A. Olson, Ph.D.Director of Education and TrainingRehabilitation Institute of ChicogoNorthwestern University RAT CenterChicago, Illinois

Joe Owens, Jr.Executive DirectorCouncil of stole Administrators of

Vocotional RehobilitationWoshington, DC

fliklph N. Paelnelli, Ph.D.Regional DirectorRehabilitation Services AdministrationPhiladelphia. Pennsylvania

Jerry Parham, MD,Associate Directorbows loch University RA( CenterLubbock , Toros

Robert Patterson, PhD,Msociote ProfessorUniversity ol Minnesota HospitalsMinneopolls, Minnesota

Charles R. PoorAssistant to the PresidentThe Institute of Rehabilitation ond

ResearchHouston, Texos

Lorraine PriestleyResearch AssociateThe George Washington University RAT

CenterWashington, DC

Judith L RaderExecutive AideThe George Woshinglon University RAT

CenterWoshington, DC

Honorable Jennings Randolph (C-WV)U.S SenotorWashington, DC

Dr. Jorge C. RiosChairman, Department of MedicineThe George Washington University

Medico) CenterWashington, DC

Jules M. Rosenthal, Ph.D.Protect CoordinatorUniversity of Wisconsin RAT CenterMadison, Wisconsin

M. Germane RossChiefBureau of Research ond InnovationNYS Education Department/Office o(

Vocational RehabilitationAlbany. New York

William N. RydhoimAssistant to the TreosurerThe George Washington UniversityWashington, DC

Roberta Sadler, Ph.D.DirectorResearch Utilization LaboratoryWoodrow Wilson Rehabilitotion CenterFishersville, Virginia

Shannon SaylosNursing Coordinator, Rehobilitation UnitThe George Woshington University

HospitolWashington, DC

Hilde S. Schlesinger, M.D.DirectorUniversity of California. San Francisco

RAT CenterSan Francisco. California

Elaine ShaverResearch AssociateThe George Washington University RAT

CenterWashington, DC

David L. Sigman, MMSupervisorMedia Moterlals Development ond

DisseminationUniversity of Arkansas RAT CenterHot Springs. Arkansas

Susan J. SigmanProgram CoordinotorInformation Exchange ProgramUniversity of Arkansas RAT CenterHot Springs, Arkansas

EvaluationNARRTC Fourth Annual Conforenco

Ard le II Woman/Whit MAW, to the ChiefVocational Rehabilitation Services

AllsociationWashington, DC

Med 011001Member, Adatiosy CommitteeRehabilitation initNute ol ChicagoNonwestern University RAI CenterChicago. Illinois

Jame 1110116ampChairman. Advisory CouncilRehabilitation Institute ol ChicagoNorthwestern University Rill CantorChicago. INInols

le l* Spaniel, Ph.D.Director al ResearchBatton Uniwinity RAT CenterBoston. Men= hoof,'"

%Mani A. Spenser, M.D.DirectorSaylor College of Medicine Rai CenterHouston. Texas

Phyllis MagnaTraining CoordinatorEmory University Rai CenterManta, Georgia

Waller C. Woks% M.D.Director of TrainingUniversity of Washington Rai CenterSeattle, Washington

Samuel L. skeet, M.D.DirectorUniversity of Alabama in Birmingham

Rai CenterBirmingham, Alabama

Arne 0. Tamagna, M.D.DirectorThe George Washington University Rai

CenterWashington. DC

Marilyn TaylorCoordinator, Me of Medical

AdministrationRehabilitation Institute of ChicagoNorthwestern University Rail CenterChicago. Illinois

Howard Thistle, M.D.Associate Director of TrainingNew York University Rai CenterNewyork, New York

J. Paul ThomasNational Institute of Handicapped

ResearchWashington. DCLeon ThorntonDirectorRegional Rehabilitation Continuing

Education ProgramArkansas Rehabilitation Rai CenterHot Springs, Arkansas

Illehard VervilleAttorney-at-lawWhile; Fine, VenetoWashington, DCMohan! T. Walls, M.D.ProfessorWest Virginia University Rai CenterMorgantown. West %%inks

Gunn, WannsalskResearch and Training AssociateTemple.University Rai CenterPhiladelphia. Pennsytyanla

0.41. WarrenUniversity of WaShinglon Rai Center50000, Washington

Ken I. WIlliantsChairman, Advisory CouncilUniversity of Arkansas RAT CenterFayetteville, Arkansas

Soya. WilliamsDirectorDeafness and Communicative Disorders

MiceRehabilitation SeMces AdministrationWashington. DC

Myron TomlinCo-Director, Rehabilitation Engineering

CenterNew York, New York

Sheldon YuspehResearch AssociateThe George Washington University Rai

CenterWashington, DC

InterpretersLouise Moorephyrns WymanBarbara PinkFrancis SudanSue Suynllaky

Dr. Irene O. Tamagna, Program ChairmanDr. Donald W. Dow, Program Coordinator

At the conclusion of the 1980 NARRTC/RTC Conference InWashington, DC, registered participants were mailed a one.page questionnaire asking for their evaluation of the conferenceand recommendations for future conferences. The host centerreceived an approximate 20% response to the questionnaire. Thefollowing is a brief summary designed to offer suggestions forplanning of the 1981 NARRTC/RTC conference.

Please Indicate the most productive aspect of the conference.The respondents seemed basically in agreement concerningthis first question and rated the opportunity to meet with Dr.Glannini and hear her discuss plans for NIHR's future, to discurethe new NIHR regulations, and the five-year NIHR plan as highest.In addition, the opportunity to meet with other R&T Centers'personnel was listed as a' most productive aspect.

Please Indicate aspects of the conference which you wouldhave changed or omitted.This question solicited a few different thoughts, Some individualsfelt that there was too much structured time and meals as well astoo many separate workshops. Other individuals felt that moretime should have been allotted for the host center to present Itsresearch ano ling activities. Some participants suggestedthat present( ..lo from Red Centers' researchers and trainersInvolved in ; projects should have been presented to theentire group.

Please Indicate topics or Issues for next year's conference.Several individuals indicated Interest In a follow-up of the five -year NIHR plan as well as an update on the organizational andadministrative structure of NIHR. There were comments suggest-ing more Involvement with the advisory council representatives,in particular, with the handicapped consumers.

Other comments.One suggestion was to devote more time to intellectual pursuits.It Is assumed by this comment that again research or specifictraining activities carried on at individual centers might, bepresented to the entire group. Therewas one comment suggest-ing that the exhibits be eliminated due to the expense oftransporting them and the lack of Interest.

Although the host center was somewhat disappointed In theresponse return of Its evaluation survey, it is apparent thatIndividuals felt the conference was productive, useful and anImportant activity for exchanging information and new Ideas.

66