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CST [Committee on Science and Technology] - Panel Documents (1) [1977-1978] [2]
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1
COMMITTEE ON SCIENCE AND TECHNOLOGY
U.S. HOUSE OF REPRESENTATIVES
WASHINGTON, D.C. 20515
February 1, 1978
Mr. Lex Frieden
9667 Meadowvale
Houston, Texas 77042
Dear Mr. Frieden:
Enclosed is the final draft of the report to the Committee on Science
and Technology by the Panel on Research Programs to Aid the Handicapped.
It has been forwarded to Chairman Olin E. Teague for his perusal and
comment; it will be forwarded to the members of the Committee prior
to publication by the Government Printing Office as a "Committee Print"
document, which will then make it available to the general public.
In behalf of the Committee and the Committee staff who worked with
you on this study, we want to express again our sincere appreciation for
your contribution as a Panel member and want you to know that it was a
great pleasure to work with you in this important endeavor.
As this study concludes with the issuance of this report, our real work
on the Committee and staff begins to peak with the consideration of this
report and the implementation of your recommendations. We look forward
also to working with you in this process and trust that our mutual efforts
will result in a more effective utilization of our vast scientific and technolog-
ical resources for the benefit of handicapped people everywhere.
Aherm Technical Sherman Sincerely, Romfat E. Consultant Roodzant
COMMITTEE ON SCIENCE AND TECHNOLOGY
U.S. HOUSE OF REPRESENTATIVES
WASHINGTON, D.C. 20515
MEMORANDUM
DECEMBER 15, 1977
TO:
Panel on Research Program to Aid
the Handicapped
FROM:
Sherman E. Roodzant
As a small token of his appreciation for your
assistance to the Committee and the Panel on Research
Programs to Aid the Handicapped, Chairman Olin E.
Teague has requested that I forward the enclosed
calendar.
We on the Committee staff join with him in
sending you warmest regards and best wishes for a
Happy Holiday Season and a healthy and successful
New Year.
Enclosure
CONTRACT AGREEMENT
THIS AGREEMENT is made and entered into this 28th day of June
, 1977
Science and Technology
by and between the Committee on
of the U.S. House of Representatives, hereinafter referred to as the Committee, and
Mr. Lex Frieden
,
(Name of contractor)
hereinafter referred to as the Contractor, subject to the approval of this Agreement by the Committee on
House Administration of the U.S. House of Representatives.
It is hereby agreed that the Committee under authority of House Resolution
297
approved
March 2
19.77 P 95th Congress, retain the Contractor to render the follow-
,
ing services:
as set forth in page 2 attached
hereto, which is incorporated
and made a part hereof.
It is understood, however, that the Chairman of the Committee, reserves the right to terminate this Agree-
ment at any time. In such cases, the payment shall be based upon work performed.
The Committee further agrees to pay the said Contractor for all such contractual services rendered,
a sum not to exceed
$3,000 at $125.00 per day
plus, authorized traveling expenses. It is further agreed that payment for such contractual services may be
paid on a partial basis from time to time and in such amounts as the Chairman of the Committee may
approve.
The Contractor further agrees and warrants that it:
1. Has not employed any person to solicit or obtain this Agreement for any commission, per-
centage, brokerage, or contingent fee;
2. Will save the Government harmless from liability in performance;
3. Will release no information obtained in carrying out the provisions of the Contract without
prior consent of the contracting Committee;
4. Will not subcontract or assign elsewhere any of the work or service involved without prior
consent of the contracting Committee: and
5. Will not discriminate in its performance of this Agreement because of race, creed, color, sex,
or national origin and shall comply with all laws appertaining to the compensation for labor.
The Contractor further agrees and warrants that it will fully complete its services to the Committee
hereunder not later than the
31st
day
of
December
,
1977 , unless said date shall be
extended by mutual agreement of the parties to this Agreement with the approval of the said Committee
on House Administration.
No Member or Delegate to Congress, or Resident Commissioner, shall be admitted to any share or
part in this Contract or to any benefit that may arise therefrom.
Approved by the Committee on House Adminis-
Committee on
Science and Technology
tration of the U.S. House of Representatives:
Chairman
Ranking Minority Member
Chairman
Contractor (Individual or Partnership)
Dated:
(Address)
(Address)
Contractor (Corporation)
[CORPORATE SEAL]
(Business Address)
By:
(Title)
(To be submitted in quintuplicate to the Committee on House Administration)
(See instructions on the reverse side.)
Contract Agreement
Page 2
Olin E. Teague, Chairman
John W. Wydler, Ranking
Minority Member
Contractor - Lex Frieden
PANEL ON RESEARCH PROGRAMS TO AID THE HANDICAPPED
I Purpose
There is a need for further study of the problems of the handicapped,
to identify how we might more effectively utilize our vast scientific and
technological resources to benefit the handicapped. Toward this end the
Committee has authorized a panel to be retained as consultants, heretoafter
referred to as the "Panel" or "Panel member (s) for the purpose of subjecting
this matter to further study and rendering a report to the Committee on their
findings.
II Method of Study
The Panel will convene and meet in Washington, D. C. or other mutually
agreeable locations on three to five occasions in executive and open work-
shop sessions, during the course of this study. A comprehensive, select
group of handicapped citizens, as well as expert government, medical and
biomedical engineering representatives, will meet with the Panel to convey
their ideas and recommendations. Additionally, the Panel members may conduct
individual analytical research and investigative procedures necessary to
individually contribute their views and recommendations in the final report to
the Committee. The Panel will be assisted by one member of the Committee pro-
fessional staff and the necessary clerical support.
III Length of Study
The Panel will convene on or about August 1, 1977 and complete their
efforts on or before December 31, 1977. It is expected that the Panel members
will dedicate some 20-24 days to this effort, 8-10 days in Panel and workshop
sessions and the remainder in related individual research effort.
IV Study Results
In addition to the individual reports prepared by the Panel members,
the Panel will compile a record of its proceedings and findings and render
to the Committee a summary and comprehensive report of its recommendations.
OLIN E. TEAGUE, TEX., CHAIRMAN
JOHN L. SWIGERT, JR.
EXECUTIVE DIRECTOR
DON FUQUA, FLA.
JOHN W. WYDLER, N.Y.
WALTER FLOWERS, ALA.
LARRY WINN, JR., KANS.
HAROLD A. GOULD
ROBERT A. ROE, N.J.
LOUIS FREY, JR., FLA.
PHILIP B. YEAGER
MIKE MC CORMACK, WASH.
BARRY M. GOLDWATER, JR., CALIF.
FRANK R. hammill, JR.
GEORGE E. BROWN, JR., CALIF.
GARY A. MYERS, PA.
DALE MILFORD, TEX.
HAMILTON FISH, JR., N.Y.
COMMITTEE ON SCIENCE AND TECHNOLOGY
JAMES E. WILSON
WILLIAM G. WELLS, JR.
RAY THORNTON, ARK.
MANUEL LUJAN, JR., N. MEX.
RALPH N. READ
JAMES H. SCHEUER, N.Y.
CARL D. PURSELL, MICH.
U.S. HOUSE OF REPRESENTATIVES
ROBERT c. KETCHAM
RICHARD L. OTTINGER, N.Y.
HAROLD C. HOLLENBECK, N.J.
JOHN P. ANDELIN, JR.
ToM HARKIN, IOWA
ELDON RUDD, ARIZ.
SUITE 2321 RAYBURN HOUSE OFFICE BUILDING
JAMES W. SPENSLEY
JIM LLOYD, CALIF.
ROBERT K. DORNAN, CALIF.
REGINA A. DAVIS
JEROME A. AMBRO, N.Y.
ROBERT S. WALKER, PA.
ROBERT (BOB) KRUEGER, TEX.
EDWIN B. FORSYTHE, N.J.
WASHINGTON, D.C. 20515
MINORITY COUNSEL:
MARILYN LLOYD, TENN.
MICHAEL A. SUPERATA
JAMES J. BLANCHARD, MICH.
TIMOTHY E. WIRTH, COLO.
STEPHEN L. NEAL, N.C.
THOMAS J. DOWNEY, N.Y.
DOUG WALGREN, PA.
June 28, 1977
RONNIE G. FLIPPO, ALA.
DAN GLICKMAN, KANS.
BOB GAMMAGE, TEX.
ANTHONY c. BEILENSON, CALIF.
ALBERT GORE, JR., TENN.
WES WATKINS, OKLA.
RICHARD A. TONRY, LA.
Mr. Lex Frieden
9667 Meadowvale
Houston, Texas 77042
Dear Mr. Frieden:
Thank you for accepting my invitation to serve with the
Panel on Research Programs to Aid the Handicapped. Your in-
terest and dedication in this area and your generous assis-
tance to the Committee is deeply appreciated.
Enclosed is a formal Contract Agreement which must be
endorsed and executed prior to submittal and approval by the
Committee on House Administration and the convening of the
Panel. This contract provides for consultant fees and the
authority to reimburse you for any necessary travel expenses.
Please endorse the five (5) copies of the Contract Agreement
form at the line designated "Contractor", sign and date page
2 attached thereto, and return as soon as possible in the
enclosed, preaddressed envelope. An extra copy is enclosed
for your records and a completed copy will be provided to
you on or before the first Panel meeting, which has been
tentatively scheduled for August 1st and 2nd, 1977.
If you have any questions regarding this contract or the
Panel, please do not hesitate to contact Mr. Sherman Roodzant
of the Committee staff (202) 225-5029 or 225-6371. Thank you
again for your participation in this very important program.
Sincerely,
Olin { Teague
OLIN E. TEAGUE
Chairman
Enclosure
OLIN E. TEAGUE, TEX., CHAIRMAN
JOHN L. SWIGERT, JR.
DON FUQUA, FLA.
JOHN W. WYDLER, N.Y.
EXECUTIVE DIRECTOR
WALTER FLOWERS, ALA.
LARRY WINN, JR., KANS.
ROBERT A. ROE, N.J.
LOUIS FREY, JR., FLA.
HAROLD A. GOULD
MIKE MC CORMACK, WASH.
BARRY M. GOLDWATER, JR., CALIF.
PHILIP B. YEAGER
GEORGE E. BROWN, JR., CALIF.
GARY A. MYERS, PA.
FRANK R. HAMMILL, JR.
DALE MILFORD, TEX.
HAMILTON FISH, JR., N.Y.
COMMITTEE ON SCIENCE AND TECHNOLOGY
JAMES E. WILSON
RAY THORNTON, ARK.
MANUEL LUJAN, JR., N. MEX.
WILLIAM G. WELLS, JR.
JAMES H. SCHEUER, N.Y.
CARL D. PURSELL, MICH.
RALPH N. READ
U.S. HOUSE OF REPRESENTATIVES
RICHARD L. OTTINGER, N.Y.
HAROLD C. HOLLENBECK, N.J.
ROBERT C. KETCHAM
TOM HARKIN, IOWA
ELDON RUDD, ARIZ.
JOHN P. ANDELIN, JR.
JIM LLOYD, CALIF.
ROBERT K. DORNAN, CALIF.
SUITE 2321 RAYBURN HOUSE OFFICE BUILDING
JAMES W. SPENSLEY
JEROME A. AMBRO, N.Y.
ROBERT S. WALKER, PA.
REGINA A. DAVIS
ROBERT (BOB) KRUEGER, TEX.
EDWIN B. FORSYTHE, N.J.
WASHINGTON, D.C. 20515
MARILYN LLOYD, TENN.
MINORITY COUNSEL:
JAMES J. BLANCHARD, MICH.
MICHAEL A. SUPERATA
TIMOTHY E. WIRTH, COLO.
STEPHEN L. NEAL, N.C.
THOMAS J. DOWNEY, N.Y.
DOUG WALGREN, PA.
RONNIE G. FLIPPO, ALA.
June 20, 1977
DAN GLICKMAN, KANS.
BOB GAMMAGE, TEX.
ANTHONY c. BEILENSON, CALIF.
ALBERT GORE, JR., TENN.
WES WATKINS, OKLA.
RICHARD A. TONRY, LA.
Mr. Lex Frieden
9667 Meadowvale
Houston, Texas 77042
Dear Mr. Frieden:
I am grateful for your participation on the Committee's recent Panel
on Research Programs to Aid the Handicapped and I would like to ask you to
serve again as a member of a new consultant Panel group which I am appoint-
ing to advise the Committee in this area.
The function of this Panel will be to conduct a study and examination
of the requirements for legislative implementation and further analysis,
as appropriate, of the earlier Panel's findings and recommendations. I
would also like the report of the recent White House Conference on Handicapped
Individuals to be included for consideration in your deliberations. I would
anticipate a report from this Panel to include findings and recommendations
for specific legislative measures which will have a positive effect on the
lives of handicapped individuals.
I would expect that the Panel will convene and commence its efforts
around the 1st of August and will want to meet three to five times here in
Washington, D. C. or various other locations prior to the culmination of
its efforts by the end of the year. Subject to the wishes of the Chairman
and the members of the Panel, I would also expect the Panel to receive
briefings by representatives of various professional, government, and
consumer groups interested in this endeavor and to review the documents and
publications relevant to the subject.
As a member of the Panel you will be eligible for a consultant fee
of $125 per day and your travel expenses will be reimbursed to you.
Mr. Sherman Roodzant, a member of the Committee professional staff, will
assist you and the Panel in its efforts, on a full-time basis. He can be
reached by telephone at (202) 225-5029 to answer any questions you may have.
Mr. Lex Frieden
June 20, 1977
page 2
I believe the work of the Panel will make an important contribution
in brightening the future of hundreds of thousands of our handicapped fellow
Americans and neighbors around the world; and I hope you will be able to
accept this invitation. Please telephone Mr. Roodzant at your early con-
venience indicating your desire to serve on this Panel, in order that he
might expedite the necessary administrative paperwork. Thank you for your
consideration in accepting this challenging responsibility.
Sincerely,
Olm E Teague
OLIN E. TEAGUE
Chairman
OLIN E. TEAGUE, TEX., CHAIRMAN
JOHN L. SWIGERT, JR.
DON FUQUA, FLA.
JOHN W. WYDLER, N.Y.
EXECUTIVE DIRECTOR
WALTER FLOWERS, ALA.
LARRY WINN, JR., KANS.
ROBERT A. ROE, N.J.
LOUIS FREY, JR., FLA.
HAROLD A. GOULD
BARRY M. GOLDWATER, JR., CALIF.
PHILIP B. YEAGER
MIKE MC CORMACK, WASH.
GEORGE E. BROWN, JR., CALIF.
GARY A. MYERS, PA.
FRANK R. HAMMILL, JR.
DALE MILFORD, TEX.
HAMILTON FISH, JR., N.Y.
COMMITTEE ON SCIENCE AND TECHNOLOGY
JAMES E. WILSON
RAY THORNTON, ARK.
MANUEL LUJAN, JR., N. MEX.
WILLIAM G. WELLS, JR.
JAMES H. SCHEUER, N.Y.
CARL D. PURSELL, MICH.
RALPH N. READ
U.S. HOUSE OF REPRESENTATIVES
HAROLD C. HOLLENBECK, N.J.
ROBERT C. KETCHAM
RICHARD L. OTTINGER, N.Y.
TOM HARKIN, IOWA
ELDON RUDD, ARIZ.
JOHN P. ANDELIN, JR.
SUITE 2321 RAYBURN HOUSE OFFICE BUILDING
JIM LLOYD, CALIF.
ROBERT K. DORNAN, CALIF.
JAMES W. SPENSLEY
JEROME A. AMBRO, N.Y.
ROBERT S. WALKER, PA.
REGINA A. DAVIS
ROBERT (BOB) KRUEGER, TEX.
EDWIN B. FORSYTHE
WASHINGTON, D.C. 20515
MINORITY COUNSEL:
MARILYN LLOYD, TENN.
MICHAEL A. SUPERATA
JAMES J. BLANCHARD, MICH.
TIMOTHY E. WIRTH, COLO.
STEPHEN L. NEAL, N.C.
THOMAS J. DOWNEY, N.Y.
August 8, 1977
DOUG WALGREN, PA.
RONNIE G. FLIPPO, ALA.
DAN GLICKMAN, KANS.
BOB GAMMAGE, TEX.
ANTHONY c. BEILENSON, CALIF.
ALBERT GORE, JR., TENN.
WES WATKINS, OKLA.
RICHARD A. TONRY, LA.
Mr. Lex Frieden
9667 Meadowvale
Houston, Texas 77042
Dear Mr. Frieden:
I am pleased that the Panel on Research Programs to Aid the Handicapped has
begun its activities and I am grateful for your participation in this important
Committee activity. I look forward to meeting with you at the next Panel meeting
scheduled for 9:30 a.m., September 12-13, 1977 in Room 2325 of the Rayburn House
Office Building.
Dr. William A. Spencer, Panel Chairman, and Adm. M. D. 'Dick' Van Orden,
Panel Vice Chairman, met with Mr. Roodzant on August 5th to organize Panel sub-
committees pursuant to the wishes of the Panel. Enclosed is a list of the study
groups and your individual assignments.
In addition, Dr. Spencer and Adm. Van Orden have asked that each Panel member
critique the enclosed report of the previous Panel. Please review the findings
and recommendations of this report, indicating your concurrence or disagreement,
and your assessment of the need to develop additional data and findings relative to
this Panel's recommendations. This critique should be delivered to Mr. Roodzant
prior to August 26, 1977 in order that the study group assigned with reviewing
the validity of findings may have ample time prior to the next meeting to analyze
these viewpoints.
It is hoped that each study group will meet prior to the next full Panel
meeting and be prepared to render a report on its activities to the full Panel.
Study group meetings will be called by the study group chairmen in cooperation
with Committee staff.
I want to thank you again for your participation in this study. Best wishes
for continued success in this effort and all your endeavors.
Sincerely,
Olin E Jergue
OLIN E. TEAGUE
Chairman
Nov. 15, 1977
Research Programs to Aid the Handicapped
Lawrence A. Scadden, Ph. D. notes.
Legislation must be enacted which will provide a stronger mandate
to NASA for providing managerial services, coordination of a comprehen
sive research program on an inter-agency basis, and for the conduct of
research itself directly related to the identified needs of the
handicapped populations of the nation. The enactment legislation must
also hold inviolate existing agencies and budgets dealing with program
for the handicapped populations, both research programs and service
delivery programs. NASA, as the lead agency, can provide management
function through the allocation of additional funds to existing agenci
for specific research projects and/or service programs. Such expendat
can stimulate cooperation, communication, and quality programs based
on merit.
The legislation must insure the involvement of qualified handicap]
individuals and consumer organizations at all levels in the research
program process. The establishment of a cogncil of handicapped
individuals, manufacturers, research professionals, and governmental
agency representatives should be established by statute to advise the
NASA division director in program selection, design, and implementation
NASA, as the lead agency for increasing the magnitude and quality
of research programs to aid the handicapped, should have a specially
identified, defined, and established division dedicated solely to the
research programs for the handicapped population. This division canno
exist as a sub-division of the existing technological utilization bran
unless the budgetary restrictions are significatly changed. Currently
approximately ten million NASA dollars are applied to technological
utilization and only about 400,000 of these dollars can be classified
as being assigned to rehabilitation type programs. These figures may
}
only approximate or totally incorrect, but the numbers are miniscule il
comparison to the overall NASA budget. The sum allocated for research
programs for the handicapped must be significantly higher if the lead
agency is to impact RSA, VA, NIH, and other agencies involved in resea
programs for the handicapped currently.
The director of the newly created NASA division for research
programs for handicapped individuals must be knowledgeable in managemeı
techniques, naturally, but he must first First have expertise in the
needs of handicapped individuals, in existing service delivery mechani
and must be extremely conversant with professional and consumer groups
involved with the handicapped population. Finally, NASA, at its highes
administrative levels, must be ready to accept this new mandate and
authority, or the entire program should be moved elsewhere or the
stausquo of 1977 reluctantly reestablished.
LT.
#
RSA
NIH
NEW
VA
NASA
NSF
REG. BODY
Wt.
VALUE
668
406
6.35
6.5
6.46
3.4
5.43
1
I
(15)
1002
60.9
95.3
97.5
96.9
51.
81.5
5.5
443
304
5.18
6.43
456
5.37
2
(8)
A4
35.4
30.8
41.4
51.4
36.5
42.9
5.43
3,06
7.4
5.43
726
320
4,86
3 (7)
41.5
21.4
52.5
41.5
50.8
23.6
34.0
4.37
4.53
4 (16)
94.9
5.37
8.56
462
69.9
4.06
f
72,5
85.9
136.9
73.9
4:18
64.9
4.37
5.3
5 (7)
4.37
7.62
3.16
28.8
4.46
30.6
37.1
30.6
53.3
22.1
443
31.2
6 (7)
456
5.57
243
31.0
31.9
818
27.5
362
39
5.06
513
57.3
5.46
7.33
25.3
5.0
35.4
1 (6)
6.6
30.8
32.8
44
4.4
30.0
5.0
39.6
(7)
3.81
4.62
26.4
8
537
4.37
30.0
7.5
3.62
26.7
475
32.3
37.6
30.6
52.5
(7)
64
25.3
5.12
33.2
9
5.92
5.25
44.8
6.06
451
35.8
41.4
36.75
557
6.37
42.4
31.9
10
(13)
4.31
60
39
82.8
656
643
56.0
3.18
2.8
78.
85.3
11 (7)
5.43
4.31
84
3.62
41.3
37.3
525
0.06
38.0
30.2
3.93
25.3
36.75
56.4
362
27.5
25.3
n #1
1.9 1.0/22
623
563.5.
437.2
553.5
543.8
721.5
384.8
454.7
/
Y
(1)
1
11)
8.
# 10
6 # 6 #
#8 # 8
L # L#
#6 # 6
#5 # 5
#4 # 4
#3 # 3
#2 # 2
#1 # 1
TOTALS
1
4
1
2
/
E
4
/
1
/
1
RSA
1
1
3
/
1
I
4
/
3
/
E
NIH
2
2
3
/
/
/
5
1
/
/
1
/
Agency
New
3
3
1
I
/
2
5
1
I
/
/
VA
Э
6
/
1
1
1
3
2
1
2. Z
/
NASA
1
1
1
1
1
/
2
4
1
/
5
NSF
-
3
3
2
1
1
/
2
1
/
4
Body
Regulatory
/ #
# 2
TOTALS
New
Regulatory
RSA
NIH
Agency
VA
NASA
NSF
Body
#1
-
/
2
/
/
2
3
#2
2
/
/
/
/
2
/
#3
2
3
-
2
-
-
/
#4
/
3
/
-
/
/
/
#5
2
3
2
5
2
7
3
#6
4
3
2
2
/
2
/
#7
3
2
2
3
2
-
-
#8
-
-
-
2
2
2
2
#9
/
-
-
1
-
-
3
/
-
# 10
3
-
5
-
/
2
#3
TOTALS
New
Regulatory
RSA
NIH
Agency
VA
NASA
NSF
Body
#1
/
5
-
-
/
2
5
#2
2
2
/
-
-
/
2
#3
-
4
-
1
/
4
-
#4
2
-
-
/
2
3
/
#5
3
3
2
8
-
4
-
#6
2
/
/
/
/
/
-
#7
-
/
/
3
2
-
2
#8
/
-
4
/
/
-
2
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INSTRUCTION SHEET FOR PREFERENCE RATING TO ACCOMPANY THE LIST OF
FACTORS TO BE RATED AND A PREFERENCE RATING SHEET WHICH EXAMINES
POTENTIAL ALTERNATIVES FOR A NEW EMPHASIS ON R&D FOR THE HANDICAPPED
Part 1. Information Sheet
Explanation of why we should identify our subjective impressions:
A generic solution for a greatly enlarged national effort to bring the benefits of
science and technology to the handicapped person was accepted. There is need for an
effort to be funded and authorized for cooperative undertakings among agencies of the
executive and legislative branches of government and the private sector.
A larger research and development program must be accomplished. This would include a
balance of basic and applied research to solve urgent research problems that can be de-
rived from the needs of the handicapped. Methods are needed for development, transfer
and delivery of knowledge, methodologies and hardware that exist or are newly discovered.
Distribution of simple and complex technology, devices and systems that will impact the
handicapped person's health, his ability to function and would aid in his penetration of
social impediments and architectural barriers to his physical mobility must be provided.
The panel has concentrated on the physically and sensory-impaired person including the
paralyzed and amputee, the deaf and blind or deaf/blind person as the meaning of physi-
cally handicapped.
The panel has accepted the 'needs' statement and present findings of the original
panel report with some additions from the White House recommendations and other
recommendations generated by this new panel. At the last meeting there was acceptance
of the general recommendations of the first panel only insofar as the concept of the need
for some sort of governance or trusteeship. Technical support and the regular involvement
-2-
of handicapped consumers, professionals carrying out research, and practitioners is also
appreciated. The need to implement the usage of research findings and the distribution
of devices and assistive systems was included. How to use other resources such as industry and
inventors was also highlighted. Four implementary alternatives were defined. (I) Augmenta-
tion of an existing agency within government into a lead agency or (2) the establishment
of an entirely new entity within a government department (with authority and appropriations)
or (3) the establishment of an activity connected with committees of Congress as occurs with
some regulatory agencies, or (4) leaving the status quo but augmenting appropriations and
existing authorities if indicated.
Discussion and consideration of an autonomous approach, a lead agency approach,
or a new agency approach generated the need to make a subjective judgement essential for
selection of a specific solution that could be set into motion by new legislation. A concensus
among the panel members, representing as they do a variety of perspectives, is essential for
guidance and acceptability by the Committee of Science and Technology. In the view of
the Chairman of the Panel, what is desired as the consequence of any new initiative is
fairly certain.
The solution sought is a general one in which authority and operation of an
activity will justify and implement the means, the resource allocations, and the
development of research both basic and applied. Technical information and know-
ledge transfer should be accomplished. The availability and accessibility of bene-
fits of science and technology for the handicapped persons in the United States
should be the practical result. Results should be responsive to their needs, conditions,
-3-
and priorities. Their active involvement in the process and their judgements
of utility of the solutions provided would be used. Management of such a
process requires availability of current information and knowledge. This must
be derived from systematic participation of those persons affected, the handi-
capped, those providing solutions, the researchers, those utilizing such solu-
tions, the practitioners, and those authorizing them from both the executive
and legislative branches of government.
The problem to be addressed now is what is the best specific solution to achieve this
broad goal. To arrive at a better understanding of similarities and differences in preference
among the panel members for specific solutions, it is essential to: (I) characterize the
factors which comprise 'success' elements for such an undertaking and, (2) analyze
those factors in context of the organizational alternatives. A personal estimate of the
likelihood of achievement of each of these success requirements for each specific alternative
needs to be made. Since subjective judgements are involved, all such ratings will be estima-
tions. Lack of first-hand experience with each alternative, personal interest and commitment
to particular solutions for organization and management of major efforts, or lack of know-
ledge about a particular alternative account for some of the difficulties. Estimating pre-
ferences for non-existing alternatives is particularly hard. The purpose, therefore, of prefer-
ence estimation is to take each alternative, one at a time, and try to avoid comparing all
the alternatives simultaneously to the same preference factor. This is later accomplished by
a ranking process. After the process is completed in rating sheets by each individual anony-
mously, the aggregate individual ratings should disclose either a very wide difference of pre-
-4-
ference, or clusters of preferences likelihoods, or reasonable agreement for the panel as
a whole.
The extent of concensus among US greatly influences our readiness to come up with
a specific solution, which we agreed we must do. We also know that subjective judgements
of what is the 'best' solution alternative in our collective judgements should then be evaluated
for political and operational feasibility. To do this we need also to assume the existence of
some governing body representing or linking the executive and legislative branches of govern-
ment, consumers, professionals carrying out research, practice-oriented professions.
A second assumption is that it is possible to provide a governing body with a
legislated authority over policy, performance, funding priorities, control of the general
direction and scope of substantive R&D programs. This is necessary in the initial phases.
The breadth or scope and depth of the needed advice, consultative and evaluative effort
cannot be provided entirely by an internal staff to any agency. The scope and expertise re-
quired in this field is too large. Regular peer review and ad hoc advice is not sufficient.
Accordingly, some process of communication and networking and collaborative effort has
to be structured and high technology support is needed to carry out the kind of task-oriented
studies, evaluations, planning, estimations and recommendations on adequacy of follow-up.
The collection of current knowledge and information about the handicapped and their status
in a regular process is urgently needed. Using them for specification of needs and for
prioritizing their needs and judging the effectiveness of solutions afforded has to be con-
ducted in a regular way. A controlled and organized ongoing activity is, therefore,
necessary to replace the usual standing or ad hoc committee functions of the past. The
solution being addressed now is, thus, how to make this requirement and its achievement
-5-
specific enough so that a law with authorities and appropriations, administrative locations,
etc. can be specified.
To establish the success factors that could be rated by each of us, a number of key
ideas have been developed. They also offer a logical framework for establishing the success
factors. These key ideas include: the need for proper input (so adequately addressed in
the original panel report and in the recommendations of our committee review findings and
the previous panel recommendations.) Involvement is a very important idea because of
the necessity to achieve a coordinated and representative effort. Flexibility and adaptability
of the program through responsiveness to feedback from those affected is clearly another
element. The necessity of having a structure within government capable of organizing,
managing and supporting an augmented effort and coordinating existing efforts is an un-
doubted requirement. Leadership, both within and outside of government, must somehow
be established on the basis of credibility. Another key idea has been the importance of
adequately and accurately informing for commitment all of those who make possible a success-
ful effort of this magnitude. The need for acceptance and usage of a regulatory or guiding
body with adequate authority for policy development has already been discussed. Fiscal
priority determinations and support of technology and personnel to grapple with a broad,
multi-purpose effort is clearly required.
The principle of developing and protecting the new program whose capacity will
be much less than the responsibilities incumbent to it should be self-evident.
This leads to the absolute importance of holding harmless what exists in research and develop-
ment in our country at the present time and building on them rather than replacing or
destroying them. The resources are so small this would be tragic.
-6-
Finally, unless and until there is usage and impact of the outcomes produced, the
basic needs originally identified will never be resolved. A lack- of availability and
accessibility of even what is known today for those in such dire straits as the handicapped
will continue to be the status quo.
These key ideas and their related success factors as statements are shown in the
attached listing. These will be used for ranking estimations according to the attached
agenda for the next meeting. Please examine these factors and add your own and prepare
to discuss any of them. Also, note the rating sheets to be used, the explanations and the
format of alternatives. At the meeting of November 14 and 15, we will discuss the approach
to the next stage - how to deal with political and practical realities.
KEY
SUCCESS ELEMENTS FOR MAJOR NATIONAL EFFORT TO
IDEAS
BRING BENEFITS OF SCIENCE AND TECHNOLOGY TO THE
HANDICAPPED
'Proper Input'
Potential to get and use input from the handicapped on their
needs and priorities
'Involvement'
Potential capability to involve key persons in other activities
which affect program operations and success
'Feedback,
Likelihood of revision of operations from feedback from handicapped,
Responsiveness,
researchers and others regarding program benefits and deficits
Flexibility, and
Adaptability'
'Organize and
Likelihood to be able to organize and to manage the program's
Manage and
scope, depth and balance of emphases
Support'
Multi-discipline, multi-purpose, multi-professional public/private
effort having compatibility with agency's philosophy and practices
Technological support for information gathering; processing; net-
working; for communication system for needs input and user informa-
tion output
Internal capability for managing basic and appliedresearch hardware
development, testing, distribution, and technical and knowledge
transfer capabilities.
External access to knowledge sources, technical information
within and outside of government
'Leadership
Potential capability to develop and retain leadership posture internally
and
within government and externally in the public sector
Credibility'
'Informing
Likelihood of strengthening and sustaining Congressional, Presidential
for
and public interest and commitment
Commitment'
'Regulation
Probable acceptance of governance of an autonomous body (a council,
and
trusteeship or board for policy, program and fiscal priority and
Guidance
overview.
(how much on
what)
'Developing
Likelihood of developing and safeguarding and incrementing a
and
new program with fiscal capacity less than the responsibilities
Protecting
including:
the New'
Top level administrative support potential
Attracting and holding new personnel for programs
Justifying budget growth in executive and legislative
branches of government
'Holding
Likelihood of the alternative to protect and augment existing
Harmless what
R&D funding in other agencies, departments, etc. dealing with
Exists and
the handicapped.
Building on it'
'Outcome
Potential to transfer and stimulate practice usage of existing and
Usage and
newly procured knowledge, methods and technology
Impact'
Potential for impacting the service delivery system,
conceptually, methodologically and quantitatively
Potential for impacting the educational system for practi-
tioners and their updating conceptually and procedurally
Developing methods, procedures, systems for pilot testing,
evaluation, production, marketing and distribution, and
maintenance of hardware
Other Criteria You Suggest:
(Please list below)
GENERAL CAVEATS
Any alternative is not likely to succeed without continuity of commitment for authority
and money from Congress, priority in the executive branch of government and leadership
people responsible for the program.
ALTERNATIVES
SAMPLE
EXECUTIVE
LEGISLATIVE
DHEW
OTHER
Regulatory
would
Body
R
Z
New
V
N
Z
Attached to
S
1.
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
A = Personal preference estimation on a I to 10
for each alternative. The larger the number the
stronger your estimate of the likelihood that this
success factor could be achieved in the alternative's
setting. Rate each on their own without directly
comparing to another alternative.
Rating
Use N.A. in a column if you cannot decide or estimate or believe
it is not possible to estimate.
avg-
(=lyA)
N.)
SAMPLE
ALTERNÁTIVES
EXECUTIVE
LEGISLATIVE
DHEW
OTHER
Regulatory
Body
R
N
New
V
N
N
Attached to
S
1.
{
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
B = Rank order all alternatives with I being the least.
best and 7 the worst.
service
Ranking
Use N.A. in a column if you cannot decide or estimate or
believe it is not possible to estimate.
aug
lowest score=
lighest choice.
ALTERNATIVES
POTENTIAL TO GET AND USE INPUT FROM THE
HANDICAPPED ON THEIR NEEDS AND PRIORITIES
EXECUTIVE
LEGISLATIVE
DHEW
OTHER
Regulatory
Body
R
Z
New
V
Z
Z
Attached to
S
|
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
This needs little explanation since it has been
an accepted requirement of the previous panel
and testimony. The problem, however, of
getting input has not been addressed in its
$
6
?
a
I
4
4
5
technical dimensions or social considerations,
particularly patronizing attitudes felt by the
handicapped and the sensitivity to lack of
opportunity for self-representation of their needs
and conditions. The usefulness of solutions
being offered to them in the service system is a
larger issue than insufficient R&D. The context
of this judgement deals with the elements of
feasibility, practicality, technical knowledge
and procedures, experience in procuring informa-
tion from persons who have never previously
had opportunity, experience or practice in this kind
of participation
-
W
2
ALTERNATIVES
POTENTIAL CAPABILITY TO INVOLVE KEY
PERSONS IN OTHER ACTIVITIES AFFECTING
EXECUTIVE
LEGISLATIVE
PROGRAM STRUCTURE AND SUCCESS
DHEW
OTHER
Regulatory
Body
R
N
New
V
N
N
Attached to
S
{
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
This considers the complex area of viability
of the lead agency concept in and among
government agency and department structures.
The possibility of effectively involving key
persons in other agencies of government in a
coordinated manner and reaching out and find-
ing persons in the legislative branch of govern-
ment who can assist with insights and judgements
in practical, political priorities is a dimension
of 'involvement'. Finding resources for research
program activities in the private sector, mostly
external to government itself; and to be able to
provide forums and other methods for researcher
participation in a planned and participating
manner that will help provide the needed inputs
to a trusteeship is also the context of 'involve-
ment'
ALTERNATIVES
LIKELIHOOD OF PROGRAM REVISION FROM
FEEDBACK OF HANDICAPPED RESEARCHERS AND
EXECUTIVE
LEGISLATIVE
OTHERS REGARDING PROGRAM BENEFITS AND
DEFICITS
DHEW
OTHER
Regulatory
Body
R
N
New
V
N
N
Attached to
S
}
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
Feedback is built into the concept of a technically
and operationally supported information and know-
ledge seeking and consultative process to assist
the governing trusteeship or body. The quality
of appropriate policies and overview evaluations
of agency program performance is related to
quality of input. The preference estimation considers
likelihood that revisions reflecting the character
of operational effectiveness on the handicapped,
R&D needs, or lack thereof should stimulate appro-
priate revisions. Policy changes without implemen-
tary follow-through are ineffective. Flexibility
and adaptability in existing or proposed alternative
locations are the hallmarks to be searched for in
the probable administrative performance of each
alternative carrying out the program
LIKELIHOOD TO BE ABLE TO ORGANIZE AND
ALTERNATIVES
MANAGE THE PROGRAM'S SCOPE, DEPTH AND
BALANCE OF EMPHASES
EXECUTIVE
LEGISLATIVE
(These components are to be separately estimated
then averaged for a total score)
DHEW
OTHER
Regulatory
Body
R
N
New
V.
N
N
Attached to
S
{
Agency
A
A
S
Committee
The likelihood of achieving a multi-purpose,
A
H
S
F
of Congress
multi-disciplined public/private effort that
A
is compatible with the alternative's philosophy
of organization and operation
Availability of experienced personnel and
technological support or the potential for
development for such support for the information
processing, communication networking and
development of a distribution system for needs
and input and for user information output
Internally, experience in the arrangements and
methods for procuring knowledge (software) and
for hardware research and development and
distributional expertise. Externally, the degree
of sophistication in getting access to sources of
knowledge, the quality of such sources, access
to rehabilitative engineering developments of
hardware, their manufacture and distribution
Note: Some alternatives may have equal preference in your
thinking.
Average Score
POTENTIAL CAPABILITY TO DEVELOP
ALTERNATIVES
LEADERSHIP INTERNALLY WITHIN GOVERNMENT
AND EXTERNALLY
EXECUTIVE
LEGISLATIVE
DHEW
OTHER
Regulatory
Body
R
Z
New
V
N
N
Attached to
A number of related features require estimation
S
1
Agency
A
A
S
Committee
of the probability of orchestrating a national
A
H
S
F1
of Congress
commitment within government including executive
A
and legislative domains. Political savvy and
commitment to usage of input and feedback
from the handicapped constituency, the research
professionals and practitioners is crucial. The
ability to provide leadership to other existing
activities and agencies comprises the 'lead
agency' idea. Changing all present legislative
authorities and executive activities and coalescing
them into a new effort seems difficult to accomp-
lish. The judgement of leadership potential
depends upon knowledge of the character of
existing agencies, other authorities, their regula-
tions and operations, especially growth potential
proportionate to needs of their "clientele'.
ALTERNATIVES
LIKELIHOOD OF STRENGTHENING AND
SUSTAINING PRESIDENTIAL, CONGRESSIONAL
EXECUTIVE
LEGISLATIVE
AND PUBLIC INTEREST AND COMMITMENT
DHEW
OTHER
Regulatory
Body
R
N
New
V
Z
N
Attached to
S
|
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
The context is howwell informing for commitment,
the ability to develop a process of informing, and
the development of public and professional rela-
tions and timely communication and involvement in
the Office of the President, the Congress will
be carried out. A sustained commitment for streng-
thening and gradually augmenting program opera-
tions according to the successes achieved and the
benefits derived from increasing resources and
capacities. Innovative mechanisms of gaining
and holding public interest and commitment
involving research and development efforts to
understand attitudes must be possible. This item
has old and new elements.
ALTERNATIVES
EXECUTIVE
LEGISLATIVE
PROBABLE ACCEPTANCE FOR POLICY PROGRAM
FISCAL PRIORITY GOVERNANCE AND OVERVIEW
BY AN AUTONOMOUS BODY (A Council, Trustee-
ship or Board) USAGE AND FOLLOW-THROUGH
ON SUCH GUIDANCE
DHEW
OTHER
Regulatory
Body
This is probably the most difficult judgement to
R
N
New
V
N
N
Attached to
make because it has two untested ideas. First,
S
{
Agency
A
A
S
Committee
there is 'lead agency' concept with an independent
A
H
S
F
or autonomous governing process regulating it.
of Congress
A
This need not impair agency operation and follow-
through
Second, effectiveness of an outside body linking
executive, legislative and the private sector
participation is not certain. Policy guidance by
an executive group to afford timely communication
for program emphasis and fiscal priority judgements
are usually internal to an agency (with usage of
various advisory or directive bodies). These two
untested requirements make this item an important
one to estimate. Any specific alternative location
would have to grapple with this process or have.
built into it sufficient capability, commitment and
authority to conduct these processes. Guidance can
be suggested for priorities of the program, internally,
with good communication and leadership.
There is no counterpart in government except for
for ad hoc or standing advisory committees. These
rarely have sufficient support for complex kinds of
judgements and prioritizations or even evaluation
of the effectiveness of the advice rendered.
ALTERNATIVES
LIKELIHOOD OF DEVELOPING AND SAFE-
GUARDING A NEW PROGRAM WITH FISCAL
EXECUTIVE
LEGISLATIVE
CAPACITY LESS THAN THE RESPONSIBILITIES
DHEW
OTHER
Regulatory
Body
R
Z
New
V
N
N
Attached to
S
{
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
Top level administrative support potential.
It is very unlikely that a new program could
survive the bureaucratic processes without
this at the 'Secretarial' level
Attracting and holding new agency personnel.
The style of procurement and attractiveness
of the agency to acquiring professional people
within and outside the government is the con-
text
Justifying budget growth in the executive branch
of government within the Office of Management
and Budget) and within the legislative branch of
government in the various overview and appropria-
tion committees of Congress is the strength sought
in this item
Total
ALTERNATIVES
EXECUTIVE
LEGISLATIVE
LIKELIHOOD OF THE ALTERNATIVE EXAMINED
TO PROTECT AND AUGMENT EXISTING R&D
FUNDING IN OTHER AGENCIES AND DEPART-
MENTS
DHEW
OTHER
Regulatory
Body
R
N
New
V
Z
N
Attached to
S
1
Agency
A
A
S
Committee
A
H
S
F
of Congress
A
This item is critical because the magnitude
of effort is so small in our present activities
that 'holding harmless' what exists and building
on them must be a consequence of any alternative
recommended. Any successful organizational
alternative must not diminish or replace existing
appropriations. Some modification of existing
agency authorities might be needed for insurance
of a balance of emphasis among the lead agency
and those being led. This capability requires
sage political and executive judgement and
cooperation and presidential endorsement. With-
out this protection and building on the 'hold
harmless' principle, the panel's recommendation,
if implemented, could have a very negative effect
on our current national effort.
ALTERNATIVES
POTENTIAL TO TRANSFER AND STIMULATE USAGE
EXECUTIVE
LEGISLATIVE
OF EXISTING AND NEWLY PROCURED KNOWLEDGE
METHODS AND TECHNOLOGY
(Separately estimated components)
Potential for impacting the service delivery
DHEW
OTHER
system. This is envisioned as an impact which
will have conceptual dimensions in kinds of
services that are appropriate for handicapped
Regulatory
people; methodologically, in the kinds of proce-
Body
R
N
New
V
N
Z
Attached to
dures to be used for information and technology
S
{
Agency
A
A
S
Committee
transfer, and quantitatively in how well the
A
H
S
F
numbers of people afforded services would be
of Congress
A
increased. Relevant connection with the service
delivery system is essential, particularly the
components of public or private rehabilitation
service delivery system, e.g., state agencies,
professional organizations and rehabilitation
facilities, hospitals, etc.
Potential for impacting the educational system
for practitioners and the training that is used in
their updating. Introduction and adoption of con-
ceptual and procedural changes in practices for
methods of treatment and management based on
new knowledge is implied. Ability to revised
methods for selection of persons to benefit from
new technical developments and devices is included.
Promulgation of advanced training procedures and
establishment of model demonstrations, 'experiment'
stations, etc., is included.
Continued on next page, please.
POTENTIAL TO TRANSFER AND STIMULATE USAGE
ALTERNATIVES
OF EXISTING AND NEWLY PROCURED KNOWLEDGE
METHODS AND TECHNOLOGY (Page 2)
EXECUTIVE
LEGISLATIVE
DHEW
OTHER
Regulatory
Body
R
Z
New
V
Z
N
Attached to
S
}
Agency
A
A
S
Committee
A
H
S
F
of Congress
Ability to develop methods, procedures and systems
A
for pilot testing, systemation, evaluation, initial
production support, marketing, distribution, and
maintenance of a variety of devices (simple and
complex) is expected. Outcome usage impact is
most important; evidence exists already on the
failure to transfer and use existing knowledge and
technology. The reasons have not been widely
studied, nor have solutions been devised. Lack of
transfer and usage of what is known, as solutions
become more complex, requiring greater changes
in practice, greater involvement and knowledge of
the user and maintenance of follow-up methods
have not been accomplished in a 'systems' sense.
The general problem of the gap between knowing
what to do and having that available and used must
be solved.
Average Score
SMITH-KETTLEWELL INSTITUTE OF VISUAL SCIENCES
and
DEPARTMENT OF VISUAL SCIENCES
UNIVERSITY OF THE PACIFIC
2232 Webster Street
San Francisco. California 94115
(415) 567-0667 & 563-2323
August 19, 1977
To: Mr. Sherman Roodzant
From: Lawrence A. Scadden, Ph.D.
Re: Validation of the 1976 Science & Technology Report
I will attempt to test the soundness of the primary recommendation
offered by the 1976 Panel on Research Programs for the Handicapped by
applying the single recommendation to the problem areas delineated
in the report.
1. Assessment of needs: The establishment of a National Council for
Research and the Handicapped might be able to enhance the identification
of the needs of the handicapped and the prioritization of these needs
if adequate and appropriate representation of the target population
and of consumer organizations is achieved. Such representation is
more a problem of process than either function or authority. The
selection of these representatives to serve on the Council would
undoubtedly result in the naming of highly respected, visible, and
articulate individuals who are, for the most part, already involved in
providing input to the agencies providing research funds. The creation
of a Council would serve here only to insure this input.
Although consumer participation in the setting of research needs is
currently possible, I believe that the recommendation for a national
Council would insure improved participation and thereby aid in remedying
the identified problem area.
2. Imbalances in research activities: The previous panel identified
a number of problem areas related to perceived imbalances of various
elements within the broad framework of research. Four of these
identified imbalances might be improved through improved coordination
by a national council. These areas are: (1) Balance between basic and
applied research, (2) Balance between simple and complex solutions,
(3) Equitable distribution of research resources to all handicapped
groups, including age groups, and (4) Improved balance between vocational
and nonvocational rehabilitation activities. The major question
relating to the potential efficacy of such coordination would be the
authority of the Council to carry out this primary function. It seems
doubtful that any council could insure a complete elimination of these
perceived imbalances because there are so many autonomous funding agencies
involved.
Legislative appropriations may not be in balance to permit achievement
of the Council's goal in any given year. It seems that the Council would
need to be as much an advisory body for Congress as a coordinating entity
Mr. Sherman Roodzant
-2-
August 19, 1977
for executive branch agencies. I have severe reservations as to the
potential of a national council achieving the results necessary to
meet the problem of imbalance in research programs for the handicapped.
Improved input to congressional committees on science and technology
and the handicapped as well as increased cooperation and communication
between executive branch agencies must be achieved whether a national
council is established or not. The creation of a new entity with
increased authority does not seem to be sufficient to insure such
enforced communication. I think that we are dealing with two separate
problems: One dealing with input to Congress, and one dealing with
inter-agency communication.
I have one final comment to offer concerning inter-agency communication
and coordination. It is not always a benefit to have a number of
agencies with very specific jurisdictions. Frequently, researchers
have found that innovative ideas will not be considered by one agency
while being considered and supported by a second. Strict jurisdictional
distinctions may lead to the suppression of innovation.
3. Factors limiting research for the handicapped: The previous Panel
presented a substantial array of factors which appear to have negative
impact upon research for the handicapped. The first two (insufficient
funds and too many authorities which exist without clear coordination)
could best be attacked by a Council if the Council had direct influence
upon legislative appropriations. An advisory committee representing
consumers, scientists, physicians, practitioners, and industry might be
formed to advise appropriate legislative committees concerned with
the handicapped, science and technology, and appropriations. The
creation of a super-authority to coordinate the affairs of 103 already
existing, autonomous authorities seems unmanageable and probably
unacceptable to the existing authorities. A national Council, as
proposed by the previous Panel, probably could positively impact on
the remaining factors identified as limiting research for the handicapped.
Such a Council, with sufficient visibility and respect, could improve
communication between governmental, private, and volunteer agencies
dealing with the handicapped.
I believe that such a Council, as proposed by the previous Panel, should
be established within a quasi-governmental body such as the National
Academy of Science. This Council could serve as an advisory body for
Congress and the executive branch, and it could assist by providing peer
review for various granting agencies. However, I see communication to
be the primary function which can be best served by this entity. The
dissemination of information between scientists and to both practitioners
and potential consumers has been identified by the previous panel and
by many other organizations as being potentially the most important need
currently facing the area of research programs for the handicapped.
Mr. Sherman Roodzant
-3-
August 10, 1977
The extensive telecommunication system proposed by the previous Panel
is one which needs implementation at the earliest possible date. I
believe that this program will require the highest level of both
science and technology and can rightfully be considered by the U.S.
House Committee on Science and Technology as a priority item within its
own agenda.
I will make brief reference to the other two major findings of the
previous Panel. Insufficient sharing of information and knowledge:
the sharing of information and knowledge can best be achieved through
the establishment of the communication network mentioned previously.
The barriers impeding utilization of research and development results
by the handicapped are areas which need close scrutiny. Several of
these areas cannot be handled by a national council as proposed in the
previous report. The establishment of regional locations for prescription,
training, maintenance, and supply can only come through enactment of
new legislation. Similarly, the availability of such devices can only
come through proper appropriations permitting the purchase by the
consumers or by appropriate providers.
I do not see that a single solution, especially one referring to a
single national council on research for the handicapped, can address
all of these barriers. I suggest that the current Panel take a close
look at these particular problems and make new suggestions.
S.
American
Coalition of
Room 817, 1346 Connecticut Avenue, N.W. o (202) 785-4265
Citizens with
Washington, D.C. 20036
Disabilities
Inc.
Congressman Olin E. Teague
Chairman
Committee on Science and Technology
U. S. House of Representatives
Washington, D. C. 20515
Dear Congressman Teague:
It has been my pleasure to review, as a member of the present Panel on
Research Programs to Aid the Handicapped, the report of the previous
Panel. It is in my opinion an excellent report which addresses some of
the most serious concerns I have had over the past few years and proposes
some exciting solutions with which I feel quite comfortable from my
perspective as ACCD Director.
In particular, the finding of the previous Panel that research programs
on behalf of disabled individuals are fragmented and poorly funded has
been a continuing source of frustration for ACCD. It is only too true that
efforts on behalf of this population historically have focussed upon parts
of the problems with which disabled people wrestle daily, that this
fragmentation compromises the capability of governmental and private sector
research programs to resolve perplexing problems, and that the amounts
authorized, appropriated, and allocated in both sectors are far from
sufficient to do justice to the problems.
The recommendation of the Panel for a body which comprises consumers,
private researchers, and governmental representatives is responsive to
a long-standing concern of mine: that disabled people have great difficulty
obtaining a voice in the making of decisions vitally affecting their lives.
This recommendation, therefore, has my wholehearted support.
The finding of imbalances in recipient emphases, of counterproductive
competitiveness, and of limited access to services is equally a valid one.
There is, as the report notes, no major service and technical aids. information
center available to help disabled individuals become acquainted with advances
in research and practice which have the potential to help them live more
independent lives. These problems are in large part due to the lack of
adequate consumer involvement in the selection of research targets, in the
evaluation of research findings and products of development efforts, and
in the dissemination of results.
Teague, 2
A major problem identified by the Panel that the fragmentation of effort on
behalf of disabled persons produces unnecessary gaps and duplications is
another source of continual frustration for me. I cannot count the number of
studies that have, for example, addressed the auditory needs of deaf persons
but I search in vain for a solid body of evidence emanating from studies on
the needs of these persons for visual information. Similarly, I have seen
innumerable studies on the precise problems in manipulation of certain
persons with physical impairments but few on their personal and social
problems. Again, I have read many studies focussing upon what is wrong
with disabled people, but few on how their abilities may be used maximally.
There have been cases where one agency has developed over a period of years
a research protocol which has led to a steady series of advances only to
have another agency subsequently make the startling discovery that the t
problem has been overlooked entirely.
For all of these reasons, I commend the previous Panel, particularly Panel
Chairman Spencer, for a cogent and highly relevant report.
I do have some reservations with the récommendation as made. My primary
concern is that only one recommendation is proposed. The Congress is asked
to accept or reject the "National Council for Research and the Handicapped"
as a whole. I would greatly prefer a series of graduated recommendations so
that the Congress may determine which of the proposals it feels it may
support at any given time. It is my understanding that the structure which
is proposed contains within it many component recommendations, and for this
reason my comment may lack validity, but I wish to stress my belief that
several options should be set forward for consideration. To take just one
example, the possible location of the proposed Council was subject to
considerable debate. It is possible that the Panel may wish to recommend
that its primary choice is for placement as an independent body, following
the report of the previous Panel, but that if this proves impossible, placement
within the Executive Office of the President would be preferred over an
interagency committee approach. Alternatively, the Panel may wish to suggest
that a beginning be made within or without government through which a more
permanent and more desirable location may be developed.
As I have indicated, one of my deepest concerns is with adequacy of consumer
involvement. The report of the previous Panel goes further than most such
reports with which I am familiar in structuring consumer participation. But
does it go far enough? Will disabled people in fact be able to become
involved in the assessment of needs, identification of priorities, evaluation
of results, and dissemination of findings?
The previous Panel said little on the subject of research and technology to
aid disabled children and youth, yet a great deal of work has been done in
this area. I believe we need to look at this body of research to see whether
the recommended structure wouldrrequire modification to encompass work that
would be of benefit to these individuals.
Teague, 3
Finally, I was somewhatadisturbed to read the hearings record alongside
the report of the previous Panel. because there often were instances where
I could not find evidence from the witnesses which related directly to
or appeared to have generated the findings; alternatively, many of the
concerns raised by witnesses are not mentioned in the Panel's report.
With respect the latter, the demonstration by many witnesses that they
misunderstood the role of research and development in the totality of
habilitation and rehabilitation programming appears sufficient justification.
But the first continues to bother me: I see little evidence that people
consulted by the Panel were asked to address the eventual product the
recommended National Council for Research and the Handicapped and
for this reason I do not feel that a consensus for the proposal has in
fact been established. This is, perhaps, a task for the present Panel.
In any event, I would strongly support an effort to achieve such
consensus, particularly from disabled people and their organizations.
Allow me to conclude by expressing my satisfaction with the procedure
adopted by the Committee. Appointing a Panel of experts heavily weighted
with disabled cpeople themselves appears to me, on the basis of the high
quality of work performed, to be an excellent and often-overlooked
process for a legislative body to adopt. That it worked so well is a
powerful recommendation that a similar procedure be followed in the
actual performance of the work proposed; i. e., in the National Council.
Sincerely yours
Frank G. Bowe, Ph. D.
Developmental Disabilities
Law Project
University of Maryland Low School / 500 West Baltimore Street Baltimore. Maryland (301) 528-6307
Director:
Marcia Pearce Burgdort
Deputy Director:
bisan a Leviton
September 19, 1977
Stoff Attorneys:
Donald N Bersoff
Nanc, B Shuger
Savid Simonson
Director
Mr. Olin E. Teaque, Chairman
of Social Work:
Committee on Science & Technology
:- 20 K Neison
Director of Research:
U. S. House of Representatives
Robert L Burgdorf Jr
Suite 2321
Administrative
Rayburn House Office Bldg.
Assistants:
Washington, D. C. 20515
and B Gayhardt
Annelle Wingfield
regional Attorneys:
Dear Mr. Teague:
not! Smith
44m 11 Coffine.
Although my expertise concerns the legal rights
ashingtee 00)
of handicapped persons and not the area of science and
filed M Coster
technology, I would like to submit the following comments
41 Mercerolo
Virginia)
on the April 1977 Report of the Panel on Research Programs
to Aid the Handicapped. It is clear to me from my work
with handicapped clients that there has not been enough
research done to show the very positive aspects of potential
of handicapped persons to lead independent lives. I found
the panel's findings to be accurate and to focus on the
primary problems facing handicapped individuals today.
First, I would like to review the various recommendations
of the panel and secondly, to make some suggestions.
I. Review of Recommendation
I think the most important point that was made in the
panel's findings is that there has not been the proper
development or input from consumers in either determining
their own needs or in assessing the effectiveness of the
service delivery system to meet these needs. If there is
one thing that I can contribute to the panel, it is this;
that the prime consideration for the providing of service
or for doing research on behalf of the handicapped citizens
is that handicapped individuals must be involved themselves.
They cannot be relegated to a token advisory role. They
must participate actively in any kind of planning, provision
of services, or research programs as well as in the evalu-
ation process. The panel's report strongly suggests that
this should be an important factor in determining future
research efforts and gives great support to the principle
of consumer involvement. I would simply like to underscore
the importance of this contribution to have actual
Mr. Olin E. Teague
Page 2
September 19, 1977
participation from knowlegeable handicapped individuals.
I do not feel confident to comment on the suggestion that
there should be a balance between basic and applied research;
however, I do completely agree with the panel's suggestion that
the research and the products of this research should be made
accessible and available to handicapped persons. It seems very
clear that regardless of what type of research is done or the
balance between complex and simple technological solutions, the
value of the research is greatly diminished when the results are
not made accessible to handicapped individuals. In addition, I
agree with the panel's recommendations concerning the present
inbalance in research emphasis that special note should be given
to the fact that there must be corrective action taken to
change the imbalance which currently tends to exclude some
important portions of the disabled population from major research
efforts.
The report also notes that there is incomplete research on
some handicapped people such as developmentally disabled persons,
and elderly persons. The report stated that the principle focus
at the present time is on working age adults. I would like to
suggest that the committee staff follow up on some of the very
valuable research that has been done concerning children and
developmentally disabled persons especially by the Bureau of
Education for the Handicapped and also by the Office of Dev.
Disabilities at HEW. I think both these agencies, and especial-
ly B. E. H., has done a tremendous amount of research that has been
very supportive of the consept that handicapped persons should be
enabled to maximize their potential so as to live as independently
as possible. I do think that the panel's suggestion that certain
groups have been left out of certain kinds of research projects
is correct. I also feel that where research has been done
concerning the needs of particular handicap population, that these
results need to be communicated more broadly so that other disabled
persons can get benefits from the information and solutions that
have been developed.
The panel further suggests that another type of research
that is necessary is research into the need to change social
attitudes. As an advocate, I recognize clearly the need to inform
the public about, not only the human and legal rights of handi-
capped persons, but also the great potential that these individuals
have to contribute to our society. I think that this is extremely
important, and I would suggest that in any attitudinal study that
careful study/analysis be given to the work done in the last 7 years
by the legal advocates on behalf of handicapped persons. The legal
rights movement, or the civil rights movement, if you will,
has utilized the courts to establish the right of handicapped
persons. The courts have held that they are in fact equal citizens
and should have full access to all the opportunities our society
provides. I suggest that research on social attitudes
Mr. Olin E. Teague
Page 3
September 19, 1977
need also look at the more informal ways that change could be
accomplished in our society.
Also, I would hope that when the research is completed,
for example, in an area such as how to utilize science and
technology to remove architectural barriers in buildings and in
transportation systems, that the solutions and the technology
can be translated into womewhat simple language, so that the
average administrator or person who is responsible for
implementing the changes can also make use of the technology.
Example, what does a 5% graded ramp mean? How do you judge or
measure it?
Although I am not experienced in assessing the amount of
dollars that are spent in research on behalf of handicapped
persons, it is clear that in comparison with the amount of
funds set aside for total federal health care, that they are
an infinitesimal percentage and, therefore, cannot adequately
address the needs of this population. I can comment, however,
on the fact raised by the panel that there is no existing
mechanism tc provide team work in the public sector for the
various agencies that are conducting research on behalf of
handicapped persons, and to the best of my knowledge, there is
no counterpart in the private sector either. This makes the
ability to communicate the discoveries and solutions uncovered
through science and technology much more difficult. It
certainly impedes progress, which could only be enhanced by
the sharing of information with public agencies that currently
have responsibility for various research programs on behalf of
the handicapped.
Finally, I find it rather sad that there has been so
little effort directed towards ways of improving consumer
knowledge of, and accessibility to scientific devices that
would significantly change these individual's lives. Perhaps
of even more concern is the fact that so few efforts have been
made to change the behavior of practitioners to accept or use
new concepts and technologies. Often one will find that social
workers, doctors, psychologists, even educators will put
barriers in the way of the individual that will make it much
more difficult, and in many instances impossible, for the person
to live an independent life. This true in spite of the fact
that the technology and the methodology for helping such a
person cope in a normal environment has been proven very
successful.
Therefore, I am in strong agreement with the basic findings
of the panel concerning: 1. the need for consumer input
concerning research programs. 2. the need for a more balanced
and cooperative approach to research programs that will benefit
all types of handicapped persons. 3. the need for sharing
information with the handicapped individual himself. 4. the
Mr. Olin E. Teague
Page 4
September 19, 1977
need for communicating and coordinating research findings within
both the public and private sector.
II. Suggestions
I would like to make some comments about some various
concerns that I have, and then I will address the recommend-
ations of the Panel. One of the concerns that I have is that
in the body of the report was a mention that a disability
becoming register should be kept. Frankly, this has the
potential of one of the most negative things that could
happen. Lists of disabled persons have been made in the past
and, once they became labeled disabled, mentally retarded,
"crippled", or blind; too often, people automatically
stereotyped them. The individual is then viewed only for
his or her handicap and is not allowed to maximize his or
her own individual potentials. In addition to this stereotyping
or "classification", information concerning disabilities that
is really basically private and priveleged information, was
often shared among public agencies and access given to indivduals and
who had absolutely no business knowing the medical histories
personal facts relating to individual handicapped person.
Therefore, I am quite concerned about what is meant here by a
disability register.
Clearly, a method of assessing how many disabled persons
we have in our society and the type of services they need
should be developed. Perhaps this could be done through the
Census Bureau by asking rather detailed questions relating to
whether there is a disabled person in the household, what kind
of disability does the person have as a result of the particular
disability? I think it's the functional kind of disability that
we would be interested in keeping a register of, but there must
be adequate protections for the removal of any personally
identifiable information on individual request.
Secondly, I noticed throughout the report the term
rehabilitation was often used. The prefix "re" indicates that
you are restoring or returning an individual to his full
capacity or to "normal" life. In the field of developmental
disabilities there is another term which is equally important,
that is, habilitation. It is important for the panel to keep
in mind that many of our disabled citizens have been disabled
from birth or during the developmental period and are not
being returned to some past state of normality. I raise this
point because it is important that this Committee must not
think soley in terms of those individuals who have lost
particular abilities that they once had.
Thirdly, it is clear from the information in the report,
as well as from the testimony that was presented to the panel,
that there were not representative from certain disability groups
Mr. Olin E. Teague
Page 5
September 19, 1977
such as mental retardation, epilepsy, cerebral palsy, learning
disabilities, or autism (developmental disabilities). I would
suggest that the committee staff go quickly about compiling some
of the information on these other interest groups that might be
helpful to the present Panel's deliberations. One source of
information which I will enclose with this letter which hopefully
will be helpful is the document prepared by the President's
Committee on Mental Retardation entitled "Mental Retardation
Century of Decision" a report to the President, May of 1976.
The basic purpose of the report is to project to the year 2000
to determine what mentally retarded individuals might optimumly
expect from our society. I think that there are certain sections
and comments specifically on research that might be helpful
as well as an overview of current issues in mental retardation.
Chapters include:
1. full citizenship and legal rights
2. prevention of right to be well born
3. prevention of right to a good start in
life
4. the main service systems
5. public attitudes
6. the role of government
7. Century of Decisions costs and results
8. goals projected recommendations
I would suggest that there may well be similar kinds of plans pro-
ducted by the Office of Developmental Disabilities, HEW, that
might be helpful to the present Panel's deliberations. In
addition, the Bureau of Education for the Handicapped, which
I mentioned earlier, is required under a new federal law,
P.L. 94-142, the Education for all Handicapped Children Act,
to do a survey of each and every handicapped child within each
state throughout the country. This headcount information may
be very helpful because there will be some kind of breakdown
among the numbers reported as to what types of services individuals
might need. In fact, I read with great interest Dr. Edward
Martin's letter to you commenting on the first Panel report,
and I feel that his suggestions had great merit. It was
interesting to note that his own agency in reviewing the needs
of handicapped persons in regards to research had uncovered some
of the exact same problems that the Panel's report centered
on. His agency's response was to address each of these problems
with an individual solution. However, I find the Panel's
suggestion of an autonomous agency made up of representatives
from both the public and private sectors to be a much more
viable solution to the problem facing handicapped persons and
their utilization and maximization of science and technology.
III. Recommendations
It would seem to me from my experiences working
with government agencies, that because there is no overall
mandate for agencies to cooperate, it is almost impossible
Mr. Olin E. Teague
Page 6
September 19, 1977
for them to work together to solve the problems facing handi-
capped persons. In addition, there is a real need to involve
the private sector in utilizing science and technology to the
issues raised by the Panel. Therefore, I endorse the Panel's
suggestion for a national council for research for the handi-
capped. I recognize clearly that there might be political
problems in making this a salable concept, and I also recognize
that more work is necessary in order to clearly draft legislation
that would make this nation council a reality. Hopefully that
is one of the projects that the ongoing Panel will take up.
I think some specific comments on the proposed structure
and function of the nation council that I can make are as
follows: (1) that the listing of government agencies which
should be included, have left out the Bureau of Education for
the Handicapped and the Office of Developmental Disability as
well as the President's Committee on Mental Retardation;
(2) that in designating types of persons that might be included
from the private sector, hopefully people with background in
advocacy on behalf of handicapped persons, could be included;
and (3) under the powers section, the power of representatives
of the non-governmental agencies was too weak and should be
strengthened in any later proposal. In addition, the
responsibilities section needs to be made more strong so that
the implementating agency will be able to implement the goals of
such a national council.
Thank you again for the opportunity to participate with
the panel. I am very enthused about the work that the Panel
is doing, and hope very much that we can bring some new
enthusiasm to the efforts and recommendations of the orginal
Panel.
Thank you very much for your concern.
Sincerely,
Marcia Burgdorf
Marcia Pearce Bayday day
MPB/drh
Enclosure
PHONE: (202) 628-1037
Hanger
J. E. HANGER, INC.
40 PATTERSON STREET, N.E.
WASHINGTON, D.C. 20002
August 15, 1977
Mr. Sherman E. Roodzant
Technical Consultant
Committee on Science & TEchnology
U. S. House of Representatives
Suite 2321 Rayburn House Office Bldg.
Washington, D.C. 20515
Dear Mr. Roodzant:
In response to the letter of Congressman Teague dated
August 8, 1977, I have reviewed the Report of the Panel on
Research Programs to Aid the Handicapped. After careful
study, I find that I am in disagreement with some of the re-
commendations as developed by the original Panel.
Let me make it clear that I fully appreciate the tre-
mendous task that confronted the original Panel and I feel
that many of their recommendations will be useful as we
proceed to define more clearly some of the research efforts
that will improve the plight of the handicapped.
My strongest criticism of the Panel's Report lies in
two (2) areas:
1. I do not feel that the creation of a super-
agency such as the "National Council for
Research and the Handicapped" is either
politically feasible in the climate of today's
government of potentially workable.
2. Although charged by the Committee to identify
research programs that will assist the handi-
capped, I find that the Report does not address
itself directly to this subject, but only re-
commends it as a high priority item for the
proposed National Council.
Although I do feel that coordination and information
exchange among those organizations currently working for the
handicapped would be extremely beneficial, I do not believe
that the formulation of still another agency would be the
answer to significant improvement in this area. I whole-
heartedly agree with the recommendations of Dudley S.
Childress, Ph.D., that this effort could be spearheaded
through the Executive Office of the President. Other exist-
ing agencies such as HEW and V.A. also appear capable of
taking over such a function.
AFFILIATED
Hanger
FACILITIES IN PRINCIPAL OF THE STATES AND CANADA
2
It was very clearly brought out by the original Panel
Report that the many problems relating to the handicapped
are quite complex and extremely varied in nature, depending
on the particular affliction. This being the case, it is
my suggestion that we do not attempt to look at the problems
of the handicapped as a whole, as I believe was the case
with the original Panel. I suggest that we isolate various
categories of disabilities and find out what the major prob-
lems are today. Through this route, we can set priorities
and hopefully accomplish more in a shorter period of time.
My solution to uncovering these high priority needs
would entail going directly to either the consumer organi-
zation, association, medical, paramedical, or private/govern-
mental research agency involved with each particular segment
of the handicapped population. Here we can find the people
that are dealing on a daily basis with each particular class
of affliction and these are the people that should hold the
key to what the most pressing problems are. As an example,
I would suggest that in the area of prosthetics and orthotics,
The American Orthotic and Prosthetic Association, The
American Academy of Orthotists and Prosthetists, and the
Veterans Administration be consulted. Through this approach
we should be capable of identifying existing technology and
the state of the art in specific areas and also, identifying
the problem areas presently being encountered which need
acceleration and further research and development.
In conclusion, I feel we cannot treat the handicapped
as a whole but must break down their problems and the solu-
tion to these problems into specific disability areas. The
information sought by the Committee on Science and Technology
in its original charge to the Panel is definitely available
and obtainable.
Thank you for this opportunity to pass along my comments
to the original Panel's Report.
Very truly yours
JOSEPH M. CESTARO
Immediate Past President
American Academy of Orthotists
and Prosthetists
paralyzed veterans of america
PVA
Charleved by United States Congress
7315 Wisconsin Ave., Suite 300-W, Washington, D.C. 20014, (301) 652-2135
A CRITIQUE ON
THE FINDINGS AND RECOMMENDATIONS
OF
THE FIRST PANEL ON RESEARCH PROGRAMS
TO AID THE HANDICAPPED
BY
JAMES E. SEYBOLD, NATIONAL RESEARCH DIRECTOR, PVA
As a member of the original Panel on Research Programs to Aid the
Handicapped, I still fully support and concur with the Panel's find-
ings and recommendations. And I strongly believe in the primary recom-
mendation to create a National Council for Research and Development.
and the Handicapped. The unresolved question is, of course, its lo-
cation. I personally favor the Council working out of the Committee
on Science and Technology in some fashion since the Committee has the
oversight authority on all R & D activity except Defense. A strong
connection with the Committee would lend the high visability and
credibility envisioned for the Council. Just how or where within the
Committee it could be established required more study.
In view of the problems yet to be resolved, assuming the Council ap-
proach remains valid, the attached article by Jurgen Schmandi which
appeared in the July 29, 1977 issue of Science deserves due considera-
tion. In his article, "Federal Reorganization: Science and Tech-
nology,' he lists six principles of organization and management in
relation to science and technology to consider. They are sound pieces
of logic to incorporate in any long range planning of the proposed
Council.
To further emphasize my support and commitment, I wish to comment on
some of the correspondence Congressman Olin E. Teague received, copies
of which were furnished to this Panel.
Donald J. Miller's letter states in the last sentence of the second
paragraph that "My concern with this particular report is that it
calls for new action without really addressing solutions that already
exist within the law or already exist within agencies currently funded
by the government."
The Panel did indeed address itself to these existing solutions. In
fact, the third, fourth and fifth paragraphs of the Preface (III) hits
this immediately. In essence the report announces that there are pro-
grams which are ongoing, however, they are fragmented, uncoordinated
as a whole, chopped into cubbyholes of some agency's turf and shut off
from contact with related or other complementary programs, and the han-
dicapped individuals for whom they were designed get piecemeal services.
Perhaps Nevada is unique in this respect, but it is an example of an
isolated example.
Mr. Miller is correct in his assumption in the first paragraph, page
two, when he asserts the Panel's report implies "that agencies that are
in existence now are neither able nor capable of performing this function"
(overview). It does not exist as a totality for all R & D activity for
the handicapped.
Referring Mr. Miller's and others reference to a lead agency, it was the
opinion of the majority of the Panel that any lead agency, no matter where
it was or how it was structured, would be ineffective and run counter to
agency tradition. Agencies historically tend to expand and acquire new
domains, not to cede any of its territory to another agency. And, of
course, there was the impending threat, backed by existing examples, where
a viable unit of government was put under the purview of such a lead
agency only to become buried, isolated and forgotten in the layers of
the agency's bureaucracy.
In the first paragraph of page two, Dr. James C. Folsom, Director of the
ICD Rehabilitation and Research Center, extends this argument for a lead
agency even further by questioning the need and ability of a quasi-
governmental non-profit corporation (National Council for Research and
Development and the Handicapped). Again it was an expressed concern of
the Panel that civilian sector participation within a lead agency would
be muted and dominated by the agency itself.
Folsom's suggestion of the use of the White House Conference on Handi-
capped Individuals in the third paragraph of page is an interesting ap-
proach, however, I would like to see the final report of that Conference
first, and fully examine its structure.
Referring to the Panel's three supportive suggestions, point 3, Folsom
fails to see their relevancy to the five charges given to it. Again, the
Panel saw the immense problem and realized they could not be addressed as
such because there was no data base to draw from. The Panel did not know
how many people with what kinds of disabilities existed, or where they
were (in order that a program of needs and priorities could be developed).
Nor was the extent of the present state-of-the-art known (so the program
could move forward instead of backwards).
Also, the parameters in which the Panel was allowed to function under the
Committee on Science and Technology's Rule x(7) (r) was hard pressed to
stay within its limits. Congressman Olin E. Teague's letter of March 31,
1977, P (VII) of the report stated: "This investigation was initiated in
an effort to identify the needs and problems of the handicapped, and to
determine how this nation's vast scientific and technological resources
might be better directed towards addressing these needs and problems. "
The key words relating to scientific and technological resources were
what the Panel had to bear in mind although other needs such as medical,
rehabilitative, psychological, etc., were also identified. In short, the
scope of the Panel's findings and recommendations was made as broad as
possible. Now other elements of the handicapped population want and
need to be heard, i.e., special education, developmental disabilities,
aging, etc. It is a very complex problem.
Individuals who are now responding to the Panel's report have been astute
in the segments of the report which directly relate to their particular
cause or programs. This response and criticism is indeed gratifying
because if anything, the Panel's report has elicited an awakening and a
call for action to become involved in this, the "decade of the disabled."
But again, the need to support basic and applied research and technology
in all phases in the paramount keystone in attacking the surmounting
problems of the handicapped. The scope of the Panel should be expanded
so no group of disabled individuals is left out in a national commitment,
but it must be done in proper perspective to the total problems con-
fronting the handicapped.
29 July 1977, Volume 197, Number 4302
SCIENCE
AMERICAN ASSOCIATION FOR
THE ADVANCEMENT OF SCIENCE
Federal Reorganization: Science and Technology
Science serves its readers as a forum for the pre-
As plans for the reorganization of the government are drafted and redraft-
sentation and discussion of important issues related to
the advancement of science, including the presentation
ed, rumors about changes in the organization of science and technology
of minority or conflicting points of view. rather than by
publishing only material on which a consensus has been
programs abound. It seems timely. therefore, to consider some general prin-
reached. Accordingly. all articles published in Science-
ciples of organization and management in relation to science and technology
including editorials, news and comment, and book re-
views-are signed and reflect the individual views of the
in government which should be kept in mind as new arrangements are
authors and not official points of view adopted by the
sought.
AAAS or the institutions with which the authors are af-
filiated.
Mission agencies need strong R & D programs. The vast majority of fed-
Editorial Board
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Mission agencies need their own science policies. There is no single mod-
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1 September 1977
Mr. Sherman E. Roodzant
Technical Consultant
Committee of Science and Technology
House of Representatives
Suite 2321, Rayburn House Office Building
Washington, D. C. 20515
Dear Mr. Roodzant:
As requested by Chairman Teague's letter of 8 August 1977,
I have studied the report of the previous Panel, dated
April 1977, and have formed some opinions which I will
discuss in the following critique. I must apologize in
advance for not having the depth of understanding of the
Panel members who prepared the report. My feeling of in-
adequacy in the face of the obviously large amount of
information marshalled by the previous Panel is perhaps
shared by other members of the current Panel; however,
with adequate time and study we can hope to appreciate
better the reasoning behind the items of the report being
critiqued.
My first impression is one of amazement at the wealth
of information provided by the report. The Panel ac-
complished a monumental task in assembling, reviewing
and organizing the data into a very informative report
in a short time. It can certainly serve as a basis for
the work of the present Panel and can give us a running
start on the job we have to do.
I did note several points, however, which strike me as
counter-productive and which we should consider carefully
in providing our report. These are discussed below:
1.
The findings presented are largely negative in nature,
and set a complaining or critizing tone which influences
the reader adversely. While it is true that much of
the information justifies criticism and needs to be
set forth, there should be some positive results
somewhere to be mentioned in the findings.
2.
There is only one recommendation, and that one of
questionable practicality. While the recommended
solution to the management problem may be an ideal
one, it may not be attainable in the pragmatic,
Mr. Sherman E. Roodzant
Page 2
political environment facing the program. Technical
problems, as differentiated from purely management
ones, are hardly mentioned in the report. Perhaps
there should have been other recommendations which
could have been acted upon even though the management
problem (which seems to be the major one) is placed
in the "too hard" category.
3.
The report concentrates on "rehabilitation", which
means different things to different people. It is
certainly a most important area, but I would think
that the allied areas of "prevention" and "cure"
should be covered as well. The cure of disabiling
conditions is the ultimate goal of much scientific
research, and steady progress is being made. It
would be unwise to generate false hopes, but equally
unwise to discourage (through neglect) the research
that may produce breakthroughs of great significance,
even though they may be years in the future. Near
term applications are important; research leading to
future applications is equally important. Such re-
search as Dr. Saliba's use of heparin in treating
severly burned patients, theuse of sodium valproate
to treat epilepsy, Dr. Polis' experiments with
prostaglandin X (PGB-x) and Dr. White's use of evoked
cortical potentialsin diagnosis of visual defects can
lead to improved treatment and even cure of some
disabling conditions. Even more exciting, and perhaps
more near term, are the research programs of Dr. Sidman,
Dr. Becker, Dr. Aguayo and others on the cure of
paraplegia, including research on neural tissue transplants,
nerve tissue regeneration, nerve fiber growth, and
eventually regeneration of limbs. The previous report
devoted too much attention to care and too little to
cure research.
4.
The report is too long. It contains a wealth of
material from other sources which is needed to es-
tablish a frame of reference. But it also contains
discussions of requirements, for the proposed Council,
suggestions for its operations, and for development
of a data base and communications system - all of
which are interesting, but not directly related to the
"Charge to the Panel", page IV.
5.
I found no positive efforts (or recommendations) to begin
collection of much of the information which the report
Mr. Sherman E. Roodzant
Page 3
indicated was needed. Perhaps a series of recom-
mendations could have resulted in initiation of
G.A.O. studies to obtain the needed information.
(Finding A.1., activity (a) page 22, suggestion 2,
etc.)
6.
Finally, I found little correlation between the report
and the Charge to the Panel, Scope items 1, 2 and 3.
In particular, Scope item 5: recommendations to the
S & T committee for possible action in the area of
R & D, seems to be inadequately addressed.
Although my criticism may seem strong, it is offered with
a constructive intent. The present Panel should benefit
from the previous report and should focus its attention
on the deficiencies so that both reports may form a cohesive
whole. The previous report is a significant achievement,
and its preparers may well be proud of it. Our challenge
is to do equally well in the following report.
Sincerely,
a
M. D. Van Orden
MDVO:
LEX FRIEDEN
9667 MEADOWVALE
western union
Mailgram
UNITED
U.S.MAIL
HOUSTON TX 77063
2-013172E248 09/05/77 ICS IPMBNGZ CSP WSHB
MGM TDBN HOUSTON TX 256 09-05 0151P EST
CONGRESSMAN OLIN TEAGUE
ATTN SHERMAN ROODZANT
US HOUSE OF REPRESENTATIVES
2311 RHOB
WASHINGTON DC 20515
DEAR CONGRESSMAN TEAGUE,
THE FOLLOWING COMMENTS ARE IN RESPONSE TO YOUR AUGUST 8 REQUEST TO
PANEL MEMBERS FOR THEIR OPINION OF THE PREVIOUS PANEL REPORT. AS A
MEMBER OF THAT PANEL I FEEL AS IF MY OPINIONS ARE CLEARLY EXPRESSED BY
THE REPORT. I CONTINUE TO CONCUR WHOLEHEARTEDLY WITH THE NOTION THAT
SOME TYPE OF PERMANENT COORDINATIVE OVERSIGHT STRUCTURE MUST BE IMPOSED
ON PRESENT RESEARCH EFFORTS RELATING TO THE HANDICAPPED IN ORDER TO
ORCHESTRATE AND MAXIMIZE THE POTENTIAL BENEFITS OF THIS RESEARCH.
SUPPORT FOR THIS IDEA CONTINUES TO ARISE FROM PROJECTS SPONSORED BY THE
WHITE HOUSE CONFERENCE, THE OFFICE OF HANDICAPPED INDIVIDUALS, THE
NATIONAL SCIENCE FOUNDATION, THE NATIONAL PARAPLEGIA FOUNDATION, AND
THE AMERICAN COALITION OF CITIZENS WITH DISABILITIES, I BELIEVE THE
PRIMARY TASK OF THE PRESENT PANEL SHOULD BE TO SPECIFY THE PARAMETERS
OF SUCH A BODY OR STRUCTURE AND TO OPERATIONALIZE THE CONCEPTS MORE
CLEARLY. ADDITIONALLY, I BELIEVE THAT WE SHOULD EMPHASIZE THE POINT
THAT ADDITIONAL FUNDING FOR CERTAIN PROGRAMS AND PROJECTS SUCH AS A
NATIONAL INFORMATION GATHERING AND DISSEMINATION SYSTEM IS GREATLY
NEEDED AT THE PRESENT TIME. FINALLY, I WOULD LIKE TO RECOMMEND THAT THE
PANEL STUDY CAREFULLY THE PRESENTATION ON INTERGOVERNMENTAL
COORDINATIVE PROBLEMS MADE BY DOCTOR DAVID WALKER AT THE OHI CONFERENCE
ON THE COORDINATION OF PROGRAMS SERVING HANDICAPPED INDIVIDUALS,
JANUARY 23-25, 1977. I LOOK FORWARD TO MEETING WITH YOU ON THE PANEL
AGAIN EARLY NEXT WEEK. YOURS TRULY
LEX FRIEDEN
13:51 EST
MGMCOMP MGM
The White House Conference on Handicapped Individuals
(202) 382-3275
TTY (202) 382-3724
30 August 1977
Mr. Sherman E. Roodzant
Technical Consultant
Committee on Science and Technology
U. S. House of Representatives
Washington, D.C. 20515
Dear Sherman:
This is a reply to Mr. Teague's letter of August 8th
requesting a critique and recommendations of the Panel
on Research Programs to aid the handicapped.
In considering the previous Panel's report and the sense
of the deliberations and recommendations of the White
House Conference on Handicapped Individuals I am guided
by one major concern. That is that the result of such
research should as far as possible be practical and within
the reach of disabled individuals. It should be meaningful
to change their lives and to assist them to achievable
goals such as employment, independent living, education,
transportation.
The average disabled individual will not be benefitted
by a device which is SO expensive no one can afford it
or the cost of maintenance and repair.
I am proposing that the Panel consider recommendations
of two programs which will be responsive to the needs expressed
at previous meetings and at the White House Conference on
Handicapped Individuals.
1. Research Fellowships
Establish a program of Federal Research Training
Fellowships designed to explore new methods
of utilizing research findings for the benefit
of handicapped persons. The emphasis of such
training would be on the transfer of science and
1832 M Street, N.W. / Suite 801 / Washington, D.C. 20036
Mr. Sherman E. Roodzant
30 August 1977
Washington, D.C.
page 2 of 2
technology information to practical
application. Consideration to be given
to naming the Fellowship for Mr. Olin E. Teague.
2. Coordination of Science and Technology
Information.
Support a mechanism that will coordinate
information about application procedures,
financial support and review process for
Federal grant programs in the area of science
and technology. And also to support the
dissimination of information of research
programs in science and technology as they
relate to the handicapped field. This should
include the encouragement and coordination of
programs sponsored by private industry which
has great resources to be encouraged towards
this end.
Support for both these programs can be by transfer of funds to
existing HEW activities. The Research Fellowships can be
supported as part of the RSA Training Grant Program. The
Information Coordination can use the existing authority in
the HEW Office for Handicapped Indivisuals (PL 93-112, Sec 405
(a) (4) )
I am hopeful that these recommendations will be helpful to the
Panel in reaching their final recommendations.
With my very best wishes.
Sincerely yours,
Handi
Henry Viscardi, Jr.
mj
HEALTH
NOITY
DEPARTMENT OF HEALTH, EDUCATION, AND WELFARE
GREAT so
PUBLIC HEALTH SERVICE
USA
NATIONAL INSTITUTES OF HEALTH
BETHESDA. MARYLAND 20014
Mr. Sherman E. Roodzant
Technical Consultant
Committee on Science and Technology
U.S. House of Representatives
Suite 2321 Rayburn Office Building
Washington, D.C. 20515
Dear Mr. Roodzant:
Mr. Teague recently sent the Report of the Panel on Research Programs
to Aid the Handicapped and asked that I review the findings and recom-
mendations of the report, indicate concurrence or disagreement, and give
an assessment of the need to develop additional data and findings relative
to the panel's recommendations.
I have reviewed the report and the opinions of the two dissenting
panelists and find that I agree with the majority recommendations. NIA
has recently been interested in bioengineering enhancement for the
elderly and finds the field to be extremely fragmented. The described
Council should help remedy this condition. I think that the described
Council should be established by Congress and report in to the President.
I was pleased by the attention that was drawn to the fact that the
principal focus to date has been on the needs of working-age adults with
insufficient attention to children and the elderly.
I look forward to working with the other panelists as my currently excessively
busy schedule permits. When I cannot personally participate in meetings
I shall ask Leroy E. Duncan, Jr., M.D., NIA's Special Project Officer,
to represent me.
Sincerely yours,
RobetN.Buths Robet N. Butles
Robert N. Butler, M.D.
Director
National Institute on Aging
NASA
National Aeronautics and
Space Administration
Washington, D.C.
20546
Reply to Attn of KT
SEP 2 1977
Mr. Sherman E. Roodzant
Technical Consultant
Committee on Science and Technology
U.S. House of Representatives
Suite 2321 Rayburn House Office Building
Washington, DC 20515
Dear Mr. Roodzant:
As requested by Congressman Teague in his letter dated
August 8, 1977, I have enclosed my comments pertaining to
the report of the Panel on Research Programs to Aid the
Handicapped. I have expressed some concern on the proposed
approach to the basic problem and look forward to discussing
this subject at our next meeting.
Sincerely,
Ray
Raymond P. Whitten
Chief, Biomedical Applications Division
Technology Utilization Office
Enclosure
Comments on Report of the Panel on Research Programs to Aid
the Handicapped to the Committee on Science and Technology
U.S. House of Representatives-Ninety-fifth Congress:
I. Principal findings of the panel
A. Assessment of needs- well done
B. Imbalances in research emphasis
1. Definition is mandatory- this statement may be
true for mission agencies but cannot be generalized
to all agencies unless there is a major change in
mandates.
2. Definition study is needed to document position and
lay out strategy.
3. This statement is far too general to be useful.
Three things are needed here. (1) Definition of what
is needed (independent study); (2) Government re-
strictions on co-developing with industry removed
so that federal agencies can cost share with manu-
factures to expedite technology transfers and share
some of the initial risk capital; (3) Ability to
organize which agency is doing what and where to
go for services.
4. Agreed- but one needs to conduct a proper study
to organize the various aspects of this problem
and prepare a plan for implementation.
5. Agreed- there needs to be one mission agency. This
agency must manage by objectives. It must be struc-
tured to understand the full problem, to conduct
special systematic studies and coordinate research.
Coordination is not meant to direct. The mission
agency should be able to: (1) properly describe/
define the major problems facing the handicapped;
(2) rank order; (3) promulgate annual statements
and (4) cost share development programs with other
agencies whose technology base may help provide
solutions to those obstacles impeding progress.
C. Limiting factors in research for the handicapped
1.b. This statement needs to be vastly expanded and
documented.
1.c. Is lacking proper perspective and concluding
recommendation.
Chart page 4 This chart should be redone to contrast
and compare expeditures per capita and general
expeditures for Health Care.
2.a.&b. A case can be made here but the problem should
be documented and specific to the issue to be
meaningful. A special study contract is needed
to properly pull it together.
D. Highly Endorse
E. Generally agree; however, funding to transfer technology
quickly is hampered by government regulations on pro-
curement procedures and/or contracting. There are
few cases where technology can be directly transferred.
The venture capital of industry is again a major issue.
More precise information is needed to defermine the
potential market and identify users. Again a proper
study is needed to document the problem areas. In
addition to all of the above, the impact of the FDA.
regulations need to be associated with a precise prob-
lem statement for each category of concern. The cost
and effort required to meet the FDA requirements could
far exceed the engineering development. Funds are not
readily available to meet this burden. A mission agency
for this purpose is almost a necessity and so is the
mandate to couple this service with the advocating
manufacturer.
II. Implications of the Finding and Development of a Recommenda-
tion and III. Recommendation
Paragraph 3 page 7.
"There is also a need to expand the depth and scope of
R&D. Commensurate with the needs of the disabled. II This
statement should not stand alone. There is a need to better
define the problem; put it in proper perspective and dissem-
inate a well written problem statement with co-funding
opportunities.
"Getting widespread usage of the practical results is a
most glaring need. " Well said!
Paragraph 4 page 7.
Don't feel this is a fair statement. From our viewpoint
the proper emphasis on a single agency in the government
has been lacking. This should be the first step in re-
direction.
Paragraph 2 page 8 and general comments pp. 9-10
Don't agree that this is the next logical step. A paid
for consultant group might be the focus as a complimentary
aid to the specific mission agency. This group would
identify problems and recommend priorities to a government
consortium rather than direct or review-tangential efforts.
Page 11-13 This could be a useful structure for the mission
agency; with the non-government body being reduced to
the role of a consulting council.
ROBERT FULTON COMPANY
FLYING RIDGE
NEWTOWN, CONNECTICUT 06470
24 August 1977
Olin E. Teague, Chairman
Committee on Science and Technology
U.S. House of Representatives
Suite 2321 Rayburn House Office Bldg.
Washington, D.C. 20515
Dear Mr. Teague:
This will reply to your letter of 8 August, 1977,
requesting that the present Panel members critique
the Report submitted by the first Panel.
Having been a member of that first Panel and some-
what closely involved with preparation of the Report,
I feel too close to the subject to render an
objective opinion. I therefore took the liberty of
requesting a number of individuals who are highly
interested and qualified in the subject to give
me their considered views of the matter which I
herewith pass on for consideration.
They were very much in agreement with the findings
and recommendations of the Report. The conducting
of further investigation would no doubt simply
reinforce the data and conclusions already arrived at.
The question of how to implement the recommendations
they did not attempt to answer since it is an issue
which even the Panel and the Committee are going
to find difficult to solve. They were in general
agreement, however, that its implementation could
be a tremendous boon to the world of the handicapped,
the sooner the better.
page 2
There was also general agreement among my critics"
that an effort be made to present it in easier to
read terms. One of them stated that in order to
comprehend it at all she found it necessary to go
through a "decoding process" which, as you will see
from the attached, required a great deal of time
and effort. I enclose it herewith with the thought
that it may help those concerned with writing the
next report to avoid the same problem.
In a reaction similar to that of virtually all the
witnesses who appeared before the first Panel, each
critic had thoughts about how funds could be expended
to aid in their specific areas of interest. To
accomplish this with the maximum efficiency and
efficacy is, of course, the purpose of the Report's
major Recommendation without the implementation of
which there is no orgainzation or system broad
enough in authority or evaluating capacity to
determine an optimum program from need to research
to delivery and serviceability.
It would seem that the primary issue before the
present Panel is not one of what needs to be done
but rather of how to do it. The first Panel did not
create anything. It investigated and reported the
facts as they are and made a logical recommendation
for a course of action: the creation of a combined
government and private enterprise organization
capable of integrating their already extensive but
disassociated efforts to help the handicapped
through a well planned program ranging from the
first step of determining needs all the way through
research, production, distribution and servicing.
In the world of the non-handicapped such a system
creates and perpetuates itself by the sheer economic
forces of demand and supply but in the world of
the handicapped the forces are too scattered and
still too disorganized to get the system off dead
center. A major organizational impetus is required
to provide the inertia to produce an eventually
self sustaining system.
page 3
The time is right. There is a subconscious recognition
on the part of the public of the magnitude of the
issue. It now needs a place to go that can pull
it all together --- numbers, needs, funds, programs,
production incentives, deliverability, servicability
and education, all with a total follow-through
momentum. This Panel has the opportunity to
formulate this organization, determine its form,
its place, its resources, its mechanism, and to
present it in such a way that it can achieve
legislative enactment.
Very truly yours,
ROBERT E.FULTONER.
President
REF, Jr./jf
Enclosures
Report of the Panel on Research Programs to
Aid the Handicapped
to
Comm. on Science & Techn. (House) 4-77
Summarized by Audrey R. McMahon
Preface:
Primary question: How can a research program of science & technology
be put to work for the handicapped?
Secondary questions
1. Needs, numbers?? handicaps??
2. Where is the "art" at now? No sound answers available.
All plans fragmented; no wholistic plan. Concern
individualized & spotty results not enduring change.
Broader view required.
Context of handicapped's perspectives must be
understood & the magnitude of simple things.
The CHARGE
Study how Research (or applying knowledge)- Scientific &
Technological- can be used in programs.
Scope to include (not limited to):
1. Identify application of technol. In programs &
development.
2. Identify problem areas now being addressed which need
more heat.
3. Identify problems not addressed needing investigation.
4. Identify problems in application & transfer of technology
to use.
5. Recommend actions which could be "ameliorating". What
is their relationship to distribution of results?
2.
Spencer's letter: Value of consulting handicapped themselves; need
visibility, credibility & authority. Need to
reintegrate citizens. Need new laws, reaffimation
of faith in handicapped humans. Existing laws
inadequately enforced. New coalitions to be
effective.
FINDINGS OF PANEL
Research interpreted as: means to attain not only knowledge,
but methods, techniques devices, equipment & systems of benefits
potential. Interpret position & needs of handicapped consumers= "Needs".
A. Needs 1. Data on population lacking; so can't plan.
2. Need feedback from handicapped on needs and evaluation of
service delivery systems.
B. Research emphasis
1. Too much "applied" & not, flexible balance with basic
research.
2. Too much emphasis on high technology solutions not low
cost devices.
3. Availability must be programmed in with development efforts.
4. Target groups now working age adult only.
insufficient emphasis on Developmentally disabled child.
5. (Re) Integration- Developmentally disabled child & aged.
a. motivation b. barriers C. transport
d.. evaluation of living arrangements.
3.
C. Too little money applied: huge benefits of:
1. R & D potential overlooked can't test & evaluate- can't
build prototypes-
2. Scattering of authorities among Fed. no overall steering.
3. a) Difficult to research environment of handicapped with
multivariables.
b) Methodology of research unsatisfactory.
c) Few researchers & some areas unexamined.
D. Need more info exchange; avoid duplicates
a) Gov/Voluntary
b) better info on rehab methodology & linkage of source.
c) Speed up int'l info access.
Diversity of societal elements & multiple disciplines. Need
interaction of time dependent, and sequential activites, involve
Public, private & industry teamwork.
E. Handicapped can't use results of research
1. Not available; when technical research is completed matter bogs
down Person can't afford or doesn't know about devices.
a) we need service & aids info center office of handicapped not
effective.
b) Need regional assist centers tied to R & D engineering &
training centers family physician needs referral help.
2. Help consumer & practioner keep up to date re/concepts & technology.
4.
II IMPLICATIONS OF FINDINGS
Negative findings serve to show reasons for non progress. A single
solution sought. Teamwork, public & private at every R & D phase,
rather than piecemeal approaches to remedy diverse specifics.
Connections needed to forge more dynamic interaction between
science & technology and consumers and researchers. Get USE
of results.
First order requirement= criteria for performance evaluation
of R & D results and value of R & D priorities.
Consumer input on a planned & integrated basis essential. Computerized
communication suggested.
Creation of' a new level, between government and consumer for
centralization and integration is necessary. Using criteria for
evaluation, and establishing a research agenda is high priority.
Committee on Science & technology as oversight body get more
creative. Develop model research effort as prototype for coordination
among the many areas of science & technology.
At pinnacle of priority list is the need to develop national
research agenda and a process for its implementation.
Immense aggregate cost of disability not realized (hidden problem).
Effecient services will reduce dependency and justify major effort.
Present programs too samll & limited to get federal attention.
Panel advises establishment of new strong overview and coordinating
entity. Credibility must be jointly established by, the handicapped,
administrators, and researchers.
III Recommendation
An overview entity should be established. With purpose to unite
public & private ways and means for research and development. It
should:
1) Conduct ongoing assessment of number and needs of handicapped.
2) Provide systematic planning.
3) Provide enhanced implementation of R & D.
4) Conduct an evaluation of usefulness of R.
5) Evaluate availability of results.
6) Insure flow of science & technol to handi.
These should reduce the difficulties in lives of handicapped &
harvest their competencies. These objectives should be national
commitment.
IV "National Council for Research and the Handicapped"
Should consist of two bodies under one Director, appointed by
the President. Council would produce coalition of Gov't &
private activities to develop a major national research effort
responsive to the needs of. the handicapped.
5.
The Government body to include rehab administrators & agenices (to be
chosen by head of agency & the council director). The "council would
serve as liaison between agencies represented and coordinate efforts &
promote whilization of scientific & tech. activities for the handicapped.
15 agencies listed.
The non Government body would be an organized forum for consumers,
professional disciplines and private agencies and others with impacting
interests (industry & labor & voc. Rehab. plus foundations).
The Powers: to coordinate "territories". Reps. of Governmental bodies
can call upon their parent agencies to cooperate, but the non-Gov't body
depends on the "People-power" of those envolved. Coordinated action
where appropriate, and input. The functions: to "foster confluence;
streamline info exchange using communication technology & develop "state
of the art" info.
Council Functions (Services offered)
a) Statistics on handicapped.
b) Frame work for evaluation.
c) Balancing need/solution, resources, cost, time.
d) Incorporating handicapped consumer.
e) Evaluation of research needs, capabilities, priorities.
f) Cost of feasibility of R & D agenda plus distribution of results.
g) Assessment of program performance re R & D in Government & non-
Government efforts.
Cet better efficiency by coupling education & training with scientific
developments.
Information network:
For: Handicapped= info re/services.
provides= state-of--art updates.
researchers= Int'l technical data bank.
Financing:
Initial Federal funding will required for the first 5 years for
salaries & equipment and technologies. Funding will decrease as saleable
services develop. Private funding will sustain certain activities like
review of private programs.
Responsibilities:
1. Extend basic & applied research, technical development, and usage
of results.
2. Report on and analyze effectiveness of R & D implementation.
3. Promote public information on needs of handicapped and benefits
to society of rehabilitation. Explain the commitment.
(cont'd)
Location
The panel gave much thought to where the "National Council for
Research and the Handicapped" might be located. As an eutity
joining the two bodies; 1. government and 2. all the other sectors
a neutral ground is necessary. Among the options discussed were
five government offices and four examples of existing non governmental
organizations or consortia, the pros and cons of each were explored.
No specific recommendation was put forth.
Probable success factors.
1. The researcher himself must be free of the business and organizational
part of the process and have opportunity to propose his own
solution and methods.
2. While consumer participation and advocacy are essential the merit
and method of proposed research must be professional decisions.
3. Increased funding and capabilities should develop the nations
research capacity incrementally.
4. Priorities should be weighed in terms of optimal goals and realistic
R & D objectives within the review of available methods & technology.
5. Consumer understanding and realistic expectation must be josted
by inclusion in planning & evaluation and by a responsive information
system.
6. "Representation" means utilizing appropriate people selectively
in a systematized progression with intent for representatives to
progression work and act.
7. Initial adequate funding equates historically with quality of
future success.
8. The hypothesis is that cooperation & synergism will result from
public & private groups orchestrated partnership. Feedback
performance will enchance accountability.
9 & 10 Let the process not throttle research creativity and the qualities
of leadership and commitment.
(cont'd)
VI Supportive Suggestions
1. Fragmentation and limitations of scope among agencies and lack of
effective transfer of research outcomes was noted as a primary
council concern. Priorities for application of research & technology
are needed and criteria from evaluation of the functioning of the
Council itself are first objectives. Seven "How to" steps are
listed.
2. Major emphasis- substantial increases in Government research,
development and utilization and funds.
3. Develop data base and ,info system for 1. professionals 2. services
information to consumer. Implementation of a computer based clearing
house would be similar to one already authorized, but on an expanded
basis. Needs and means were itemized.
VIII Future Activities of the Committee on Science and Technology
The committee may want to test the concept expounded by the
panel. How to implement and finance the plans needs study.
The reaction of consumer groups could be considered. The
plan could be reviewed from a worlwide perspective.
Post legislative interests have fallen short of achieving
objectives. Gaps exist between legislated interests and
administrative efforts to put knowledge & technologies to work.
An extension of the committee efforts is warranted to monitor
the impact implementing authorities are achieving.
IX References
X Appendix
EAD
aw/3-11
Critique of the Report from the Panel on Devices
for the Disabled, Committee on Science & Technology,
U.S. House of Representatives
Jan Little
August 24, 1977
Having studied both the report of the panel and Robert
E. Fulton's preliminary report, it seems most effective
to form a critique by setting forth the two main areas of
concern with which the panel must deal and then commenting
upon the recommendations of the panel and evaluating the
validity of those recommendations as they fit in the
framework of the outline.
Area of Concern I. - Determination of need
A. Determination of a valid definition of "handicapped",
cataloguing what these handicaps are and which
should be dealt with in this panel's deliberation.
B. Determination of a valid population of individuals
with these handicaps. This census would ideally
be sorted into categories determined in the
first step.
C. Realistic determination of needs and collation
of these needs into usable categories; i.e.
prosthetics, electronic aids for communications,
mobility, activities of daily living, etc.
D. Establishment of a source of input to determine
needs and development of a structure to deliver
this input.
E. Collation of what exists in terms of equipment,
delivery systems, information systems and
research programs.
Area of Concern II. - Program Development
A. Establishment of the form which any authority
or council growing out of the panel's work
will take.
B. Determination of how the above authority will
interact and coordinate with the over 100 other
government agencies that now deal with the
handicapped.
C. Who and what will this authority comprise and
how will it function.
Critique of panel report (Little) -- 2
D. Who will be used to carry out programs of this
authority -- government, non-profit organizations,
private enterprise.
E. What incentives will be offered for program
participation.
F. How will limiting and penalizing legislation now
affecting equipment and devices for the handicapped
be handled.
Having set forth the framework, we can now examine the
various portions of the study.
Determination of a valid definition of the handicaps
to be served
While this process may seem elementary, it is critical
in this writer's mind because personal past experience has
indicated that lack of definition of what handicaps are
and how they are manifested has led to ignoring very real
needs, ie., communications. While determination of handicaps
and the number of people effected by these handicaps may
well be furnished by work resulting from the White House
Conference, it is a necessary foundation for further action
by the panel. Without definition of what handicaps are to
be dealt with, a great deal of extraneous input may be
received and have to be sorted.
Establishment of a realistic population (marketing) of
handicapped people
While establishing a valid census of handicapped
individuals is mentioned in the panel report, provision
for accomplishing this most critical step must be made.
This writer thoroughly agrees with Robert E. Fulton's
comments on the futility of trying to deal with estimates
of handicapped that range from 10,000,000 to 150,000,000.
Development of any programs which may lead to manufacturing
will be impossible without realistic marketing. Manufacturing
(production) is a critical step between concepts developed
by research people and delivery of an actual item to the
end consumer. If our efforts are to be successful, all
steps of the research-to-consumer process must be considered
from the beginning. Efforts to establish programs without
realistic populations would be unsuccessful.
Realistic determination of needs and collation of those
needs into working categories
This area is dealt with in the panel report and is
closely related to the previous areas. Again, this writer
Critique of panel report (Little) -- 3
does not feel the total answer to the problem
has been presented. As an individual who has
been a partial quadriplegic for 25 years, who
has worked with biomedical engineers in research
for the handicapped, who has dealt extensively with
marketing of medical equipment, I feel qualified
to issue several cautions: The handicapped consumer
is not particularly prepared to define his own needs.
1) He is frequently judging need from his own unique
patterns of paralysis, life-style, self-image and
value priorities. 2) He is frequently quite naive
of engineering, materials and marketing limitations.
The United States is still more attuned toward a
system of free enterprise than socialism. Therefore,
a delivery system could most easily be developed
within the system of free enterprise. Experience
has shown that the highly individualistic needs of
the handicapped have to be interpreted in categories
of equipment so some extent of mass production can
be utilized. While a totally customized piece of
equipment may be very suitable for one individual,
one standard model of a device which can be slightly
modified to meet the needs of many is more practical
in terms of production, marketing and final utility
to the disabled individual. Costs in the medical
equipment industry are already high because few, if
any, items can be produced on a true mass scale.
Collation of needs in equipment into like categories
might help in program development and in controlling
manufacturing costs.
It would seem that determination of needs and collation
of those needs into working categories should be
included as a priority for the panel's work.
Establishment of an input source
It is the feeling of this writer that no real provision
has been made for this step in the panel report. Without
specific structure, some regulations defining who can provide
input and how it will be provided, any efforts made in more
advanced parts of this project will either be wasted or, at
best, very inefficient. Some system to establish validity
of requests and to weight the overall need for these requests
must be established.
It seems that the establishment of an input source
relies on the development of a realistic population and
enummeration of various types of disabilities.
Critique of panel report (Little) -- 4
Collation of what exists in terms of equipment, delivery
systems, information systems and research programs
During various phases of the panel's investigations
leading to the report, the fact that there is no organized
plan of delivery of technological aids to the handicapped
(nor even a disorganized plan) is brought out. I personally
feel the problem has been understated! Bits and pieces of
technology, equipment development, information services and
delivery system are scattered geographically, functionally
and departmentally throughout government, non-profit and
profit agencies. It may well be that services available
for the handicapped may be several decades ahead of what
we think they are -- if what does exist could be sought out,
catalogued and put in logical order. Several projects now
exist to discover what exists, where it is and how it may
be made available to the handicapped. Two such projects
that come immediately to mind are Accent on Information,
being conducted by Accent on Living, Bloomington, Illinois,
and a similar project being done by the Arthritis Foundation,
New York, N. Y. There are certainly other such projects
which could be coordinated and used as a basis for work by
any authority this panel might form. Examination of these
projects should show which ones have the best structure for
such a study already developed. Perhaps such an organization
could be utilized under contract.
Other existing sources of information should be
utilized as well. For example, American Spinal Injury
Association (ASIA) has spent a great deal of time developing
a system for gathering statistics on spinal cord injury
that are coordinated in definition and procedure of reporting.
Although the topic is touched upon in the panel report,
more emphasis should be given to the development of a system
of gathering and organizing facts about the many areas that
concern the handicapped including incidence, services,
technology and equipment. Perhaps this project will grow
out of the White House Conference and can be coordinated
with the panel's work.
The development of a means to produce a mechanism
to establish meaningful exchange of information about
research, technology, services and equipment is a huge
task. It is also the basis for any other work this panel
may do. While the cybernetic system developed by the panel
seems to aim at a solution to this most critical problem,
more examination of mechanics of this task are needed to
determine the validity of the model.
Critique of panel report (Little) -- 5
The above points were addressed to some degree in the
panel report. It seems, however, that the final assessment
of feasibility depends on the amount of emphasis placed on
each of these points and the development of the actual
mechanics for accomplishing these goals.
PROGRAM DEVELOPMENT
Establishment of the form of authority
A number of good alternatives have been presented.
To this writer, placement of the authority seems secondary
to the need for this authority to be as streamlined as
possible, be subject to annual review for reappropriation
of budget and be separated from HEW. Streamlining is needed
if the authority is to avoid be cumbersome and ineffective.
Annual review could prevent adding this authority to a long
list of agencies and offices which may have outgrown their
usefulness but still exist because no one has thought to
dissolve them. Removing this authority from HEW might
provide it with the opportunity to be a watch-dog group that
could have some effect on the over 100 departments and
agencies that now deal with the handicapped, many of which
are under HEW.
How the above authority will interact and coordinate with
the over 100 other government agencies now dealing with
the handicapped
The writer is most pessimistic about the feasibility
of this objective. Most of these agencies and departments
have established concrete domains which are guarded against
outside intervention and change. Moving these agencies to
surrender part of their autonomy and enter into cooperation
with others seems a task which will require monumental
amounts of tack and diplomacy. Whether or not the goals of the
panel in establishing needs and developing programs can be
accomplished without coordinating the more than 100 agencies
is doubtful, but it may have to be attempted.
Who and what will the authority comprise and how will
it function
The panel report indicated that representatives would
be drawn from 14 government agencies, various civilian
groups, professional organizations and societies, labor,
industry, foundations and "other entities". It would seem
that such a group would be unwieldy and quite probably
inefficient. While it would be fair to allow all of these
sectors of government and industry to be heard, this writer
has grave doubts that an organizational plan can be
developed to utilize such an assembly.
Critique of panel report (Little) -- 6
Concern for where the council or authority should be
placed within the current governmental structure seems
less important to this writer than how the proposed council
will function. If properly organized and notivated, the
authority will function where ever it is located. If
organization and motivation are lacking, placement alone
will not suffice to make the authority function.
Failure of the authority to function even after it
has been established is a major concern. One has only to
look at the Architectural and Transportation Barriers
Compliance Board, which was established by Congress in 1973.
While far fewer people, representing far fewer agencies were
involved in the ATBCB and while the duties of the Board
were clearly defined and while the regulations it was to
enforce were enacted legislation, the nature of the Board
was so cumbersome that it failed to issue one citation
until March 29, 1977 -- four years after its inception.
Even then, the Board's action may have been prompted by the
forthcoming White House Conference.
Where will supporting efforts come from to carry out
programs initiated by the authority
A great amount of effort will be needed to translate
the efforts of research, fostered by any authority which
results from this panel into items readily acquired by the
disabled consumer. Although, through NASA, there is precedence
for the federal government to contract from private industry
for manufacture, there is no system known to this writer of
the federal government assuming production and marketing of
product intended for private citizens. Past efforts to
utilize government sponsored research in developing marketable
product produced by private enterprise are limited. Some have
been disasterous. A case in point is the Overly-Bressler
stand-up wheelchair. Consumer input showed that it was
important that disabled individuals be able to come to an
upright position. A wheelchair was designed that would
bring a paralyzed individual to his feet utilizing a series
of counter-balanced springs. Two things resulted. Industry
engineering and production experience were ignored. The
consumer's love affair with being in an upright position
faltered and died when the consumer saw the chair and learned
the limitations -- such as decreased mobility, inability to
transport the wheelchair and the extremely strange appearance
of the Overly Bressler. The product died in early youth --
and was nearly followed by the demise of its foster parent
company.
The writer has more first-hand experience in bringing
research to commercial availability in the situation of
Critique of panel report (Little) -- 7
various means to control the steering of a motorized
wheelchair. Intended for a small number of individuals
whose needs are intense but whose numbers are small, these
controlling systems include sip and puff, tongue control,
minimal pressure control and ross motor movement control.
These controls have been made available to the consumer
at less than $400.00. However, a great deal of the time,
effort and money to do so has been written off by the
corporation. This has been done partly through miscalculation
about what was involved in bringing the product from research
to market and partly because the company is considering
returns in the intangible areas of professional satisfaction,
prestige and building of reputation. Other commercial firms
may be reluctant to do SO. Another problem in this process
is that domestic manufacturers are restricted from exporting
by current export regulations and costs. Perhaps some tax
credits for companies investing in such projects should be
considered.
The area of offering incentive to manufacturers and
marketers of products needed by the disabled should be
explored. At the moment, there is climate in manufacturing
of products for the disabled which can only be described as
negative. The pressure for reduced costs is being put upon
a market that is small, extremely customized and very
demanding in terms of quality control and product liability.
Marketing of these products is a nightmare at best. No good
means exists to reach the potential consumer with new
products (or even established ones, for that matter).
Consumers rarely have disposable funds which theycontrol and
must rely on convincing third party carriers of their needs.
Advertising and sales promotion are extremely expensive in
terms of potential return. All of these factors are combining
to force the small manufacturer out of business. It is this
small manufacturer or distributor who can serve the needs
of the handicapped. The panel must investigate this area
thoroughly. Manufacturing and distribution are crucial
parts of the proposed delivery system which will carry
technology to the handicapped.
SUMMARY
This writer agrees that the goals the panel has set
forth are valid and critical to the health and well-being
of handicapped individuals. The proposals put forth are,
for the most part, valid. Two areas seem to call for more
definitive solutions: the actual management and structure
of a very large panel attempting to function in an area
where established, traditional agencies exist; and the forms
of aid needed to encourage private enterprise to participate
in the overall program to provide relatively low cost equipment
utilizing available technology.