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Disabled Americans Act [1976-1985]
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gook
750.0500
thaphies - Helen Barcelon
Design & production Camera ready art
&
49 his. work at 15/hr -
735
reduction
spec. type, pasted up, - 4/ complex charts r 575
Type setting
30
3 exox/materials
$1340
hogo
$200
1. meet with client
S. 2-3 roughs
3. meet with clint
S: meet with client
4. raugh
6. Final drawing 18.4 sizes
Id so
August 7, 1985
TO:
Members, National Council on the Handicapped
FROM:
Lex Frieden, Executive Director
SUBJECT: Draft Topic papers
As you know, the primary purpose of the upcoming meeting is to come
to closure on the basic approach and recommendations associated with
each of the topic areas that were selected by the Council for special
emphasis. I'm pleased to report that we have eight completed
completed drafts ready for your review at the August meeting:
Attendant Services
Disincentives to Work
Employment (presented here in two parts)
a) Transition
b) Placement
Equal Opportunity Laws
Housing
Independent Living
Transportation
As you recall, we did not come to closure on the coordination topic
during the last meeting. Staff has been researching the topic further,
and is in the process of developing an outline for discussion. It will
be ready for you at the meeting. The other outstanding topic paper, the
Children's paper, was assigned very late. We enclose a one-page topic
description and a chart that describes our approach to this topic.
Daring the meeting we will discuss a procedure for reviewing both the
Coordination and Children's paper at à later date.
se
The papers represent a major effort by the Council members and
staff. Please review them carefully prior to the meeting. Because of
the limited time available to us, the staff will focus their
presentations on the recommendations. Therefore, we would appreciate
written comments on other aspects of the papers.
We are looking forward to the meeting. Thank you for all of your
support and assistance in this important effort.
Paper presented
at July meeting
COORDINATING POLICY AND SERVICES:
AN ADMINISTRATION ON DISABILITIES?
I
OVERVIEW
There is no comprehensive national policy on
disability. A picket-fence array of programs fund
specific services for disabled people, resulting in
fragmented, disjointed services that often fail to
support the efforts of disabled people to function as
independently as possible within their communities.
The problem has a long and well documented history,
stretching back to a "Green Report" prepared in 1971-72
for the Nixon administration that documented major
coordination problems. In 1977, the White House
Conference on Handicapped Individuals identified many
systemic problems in the service delivery system, as
evidenced by repeated requests for better information
services. These problems were reiterated in the paper on
Disincentives (1984) that was prepared by the Council.
The extent of concern within the disabled community about
the need to find some solutions was reinforced by the
forums held by the Council during the past year.
The point being made by consumers over the years is
the enormous difficulty of obtaining services within
their own communities they are shunted from place to
place to obtain services for each specific need, and each
agency presents a different set of eligibility criteria,
purposes and expectations. As a result, it is nearly
impossible for the severely disabled individual who needs
a range of services to put together a workable support
system. Only the most aggressive individuals and
provider case workers make it --others suffer burnout and
settle for institutional living arrangements, which at
least provide stability and reduce run-arounds. The
Independent Living Centers have provided many disabled
people with the moral support and case management
expertise that is needed to maneuver through the system.
II
LEGISLATION/PROGRAM REVIEW
A number of efforts have been made over the
years to coordinate policies and services for disabled
people. Some of the more notable are listed below.
President's Committee on Employment of the
Handicapped. PCEH was created in 1949 in response to
/
Congressional recognition of the need to address the
employment needs of handicapped veterans
President's Committee on Mental Retardation. PCMR
was created in the 1960's in response to the Kennedy
Administration's recognition of the need to stimulate the
development and coordination of services for mentally
retarded individuals.
The Developmental Disabilities Office was
established by the Developmental Disabilities Assistance
and Bill of Rights Act of 1963 (amended in 1970 and
1975). It provides a national focal point for
individuals with developmental disabilities within Health
and Human Services; its state agencies provide the same
service at the state level, as well as developing state
plans which attempt to coordinate services for this
population. In addition, protection and advocacy
services are provided which help assure that every
disabled citizen is able to locate and use the services
to which they are entitled.
Office for Handicapped Individuals. In 197 - OHI
was created within HEW to advise the Secretary on the
needs, problems, issues and concerns of "handicapped
individuals" and to make appropriate recommendations. It
was essentially unsuccessful.
Administration for Handicapped Individuals. In
1978, Arabella Martinez, the Assistant Secretary for
Human Development, proposed an administrative
reorganization within HEW which pulled together the
Rehabilitation Services Administration, the Developmental
Disabilities Office, the President's Committee on Mental
Retardation, Office for Handicapped Individuals and
the Architectural and Transportation Barriers Compliance
Board. The new Administration for Handicapped
Individuals died a quiet death when RSA and Special
Education were moved to the Department of Education.
White House Advisor. As a direct result of WHCHI
recommendations, an advisory position was created in the
White House. = The influence and impact of the position,
which is ow held by a Senior Staff Member in the Office
of Policy Development in the Executive Office of the
President, depends on the political expertise and ability
of the incumbent.
The National Council on the Handicapped was created
in the 1978 Amendments to the Rehabilitation Act as a
direct result of WHCHI recommendations.
Federal interagency committees on disability topics
COME and go. In general, their function is limited to
information sharing, whatever the language used in their
tement of purpose.
Administration on Aging. An Administration on
Disabilities has been proposed repeatedly over the years
as a solution to the coordination problems. A working
model is in place--the Older Americans Act created an
Administration on Aging that provides a focal point for
issues of concern to elderly persons. The implementation
is: we Act hasresulted in increased interest, programs
and funding in the aging field. The Administration on
Aging has a unique network of 57 State and some 700 area
agencies that provide statewide planning and social
services at the local level, including multi-purpose
senior centers with information and referral services.
Some of these area agencies are very effective conduits
for local public and private sector networking and
community action activities.
III GAPS IN LEGISLATION AND PROGRAM
No single agency at the Federal, State or local
level has a mandate to respond to the "whole" disabled
person. Services have grown up piecemeal, as Congress
responds to society's recognition of a "worthy" need.
IV POSSIBLE SOLUTIONS
A. implementation Requirements
During the preparation of this paper, we talked with
a number of knowledgeable people about the success of the
Older American's Act. They emphasized a number of points
which they considered critical to the effectiveness of
the Order American's Act:
11
Program funds are needed to provide leverage for
the development of meaningful national, state
and local policy and service coordination
efforts. Although the Administration on Aging
has a budget of nearly $1 bilion, it is not
enough to provide leverage aginst its much larger
sister agencies-- HCFA, the Social Security
Administration, Maternal and Child Health or NIH.
AoA's nutrition program has provided some
leverage at the local level, however, and many
area agencies have attracted additional
funding.
3
Current restrictions on funding may provide the
largest single impetus to ccordinative action,
since programs are increasingly finding it
difficult to fund services to their
constituencies at past levels. For instance, AoA
recently negotiated an agreement with EPA that
retired older Americans will be hired to assist
with chemical cleanup activities.
Current service providers such as the VR
agencies and the Independent Living Centers--must
be included in the development process, since
their resistance at the state and local level
could kill new proposals. Of course, these
agencies also represent the largest available
resource. A ground swell of local support was
instrumental in passing and maintaining the
Older American's Act.
The strength of the Older American's Act is
grounded in the services and activities of the
area agencies on aging. They have great
flexibility in their organization and functions.
As a result, there is tremendous variation in the
range of activities, and area agencies are able
to coordinate local resources in a variety of
ways. One direct result is that for every #1 of
Federal funding, $2 is obtained from state and
local sources. (Conroy, 5/21) = A variety of sites
serve as area agencies on aging--about one third
are located in private nonprofit organizations,
one third in regional Council of Governments, and
one third within public agencies. This
flexibility allows State and local politicians to
receive credit for the good things that happen,
which in turn leads to increased and ongoing
community support.
Private sector involvement at both the national
and local levels has contributed greatly to aging
programs--the private sector doesn't need so much
time-to review, consider and write about
initiatives. For instance, AOA is currently
implementing an agreement with other Federal
agencies and private sector organizations that
will-encourage builders to incorporate
accessibility features into new and remodeled
housing.
The Federal Council on Aging has been
instrumental in supporting the repeated
4
reauthorization of the Older American's Act
because of its ability to provide both the
Administration and Congress with information
about the needs of the aging population from the
consumer's perspective. In particular, Congress
relies very heavily on testimony from individual
Council members and on studies conducted by the
Council on sensitive topics.
B.
Possible Functions
National Level
Provide a focus point and increased visibility
for the needs and concerns of disabled people,
including the needs of special populations.
Serve as an advocate within the federal
bureaucracy for disabled people. 1
Establish national policy objectives for disabled
people that support a continuum of services that
are individualized, community based, provided in
the least restrictive environment and encourage
independence.
Coordinate planning and policy for all programs
serving disabled people; monitor the
implementation and impact of these policies at
the state and local levels.
Establish a national information clearinghouse
with comprehensive resource materials on
disabilities and existing service Fesources. A
small version, the Clearinghouse for the
Handicapped, in the Department of Education's
Office of Special Education and Rehabilitations
Services, was recently discontinued.
Involve the private sector in coordinative
planning, since the private sector has the
vitality and flexibility to get things done.
Develop service standards and guidelines
Require and coordinate multi-disciplinary
training for professionals providing services to
handicapped persons
Coordinate the active involvement of disabled
people or their advocates in national
policy-making organizations
5
State Level
Develop and monitor the implementation of
State policies
Coordinate the implementation of Federal programs
at the state level and distribute and monitor the
use of Federal funds at the local level
provide protection and advocacy services modeled
after those provided by DD
Support the development of a network of
information and referral centers throughout the
state
Local Level
Provide a local focal point and advocacy for
community-based services
Assemble local private and public sector support
for community services such as supported work
opportunities, housing for disabled people, etc.
Provide services (assuming that funding is
available) , such as:
Information and referral
Case management
Employment center (job club, job register,
supported work, etc.)
Peer counselling
Social opportunities
Local transportation services
C. Possible Coordinative Mechanisms
Administration on Disabilities
An Administration on Disabilities would provide a
national focal point for disability policy. Placement of
an Administration on Disabilities within Health and Human
Services would automatically focus the new Administration
on health and social services. The new administration
would have peer and sister status with some of the
primary programs providing services for disabled people:
the Social Security Administration, the Health Care
Finance Administration, the National Institutes of
6
Health, Maternal and Child Care, and the Alcohol, Drug
Abuse and Mental Health Administration (ADAMHA).
The following agencies and organizations might be
pulled together to form an Administration on
Disabilities:
Rehabilitation Services Administration, which
could continue its present role or become an
adult services agency for all disabled people,
with rehabilitation services being one of its
primary services
The National Institute of Handicapped Research,
which would retain its research mandate but might
change its focus. For instance, it could focus
on research applications which support functional
life activities and local communities ability to
provide a continuum of individualized support
services.
The President's Committee on Mental Retardation
Developmental Disabilities Office, which would
provide the Administration with a model and
experience in state planning and protection and
advocacy. DD could provide an operating base
for protection and advocacy services for all
disabled people, or perhaps it might become an
Office for Disabled Children.
The President's Committee on Employment of the
Handicapped and Special Education Programs could be
folded into a new Administration, but they might retain
greater etfectiveness by maintaining their strong
linkages with the Labor Department (PCEH) and the
Department of Education (SEP).
THe ATBCB currently is an independent agency, and it
might prefer to retain this hard-won status
Pros: This colocation of agencies within a single
administration should provide a focal point for
disability policy and a means for coordinating at least
the programs within the new administration. It should
stimulate interdepartmental information exchange
within the Federal government.
Cons: There is little evidence that the colocation
of agencies at any level in the system actually results
in better coordination of services great deal of
persuasive and administrative energy is also required:
7
witness the current extent of coordination between SEP
and RSA. Although a single focal point has theoretical
value, there is little evidence of its practical
merit
Adherents of the individual agencies probably
will not consider gaining a focal point to be a great
enough incentive to yield any control over "their"
agency--and the opposition of groups with a vested
interest can kill such a proposition. One person who is
knowledgeable about the DD consortium (D.C. based)
maintains that that group would fight any change in the
status of PCMR and DD Current administrators (e.g.,
within the Department of Education) may look with E
jaundiced eye upon any loss of programs
Other agencies
may regard the new AoD as solving all of the problems of
disabled people, and SO relinquish responsibility for
serving this population
Interagency Committee
A legislatively-mandated interagency committee
could be formed, using ATBCB as a model it has
high-ranking adminstrator and public membership,
including several disabled consumers. However, ATBCB has
a very specific focus which gives it strength. It is
unlikely that a new interagency committee would have as
strong 3 sense of purpose
An Adult Services Agency
Recommendations from the White House Conference on
Handicapped Individuals and the Council's Forums indicate
that most disabled people and their advocates are looking
for a more responsive service delivery system at the
local level. Since it would be most difficult to create
a completely new agency, perhaps the most logical
approach is to convert RSA and the VR agencies into adult
service agencies. Local adult service agencies could
serve as a focal point for disability issues within the
community and : like the area agencies on aging, could
provide the nucleus for a broad range of services that
combine public and private sector resources.
Such an agency should be modeled after ApA's state
and local agencies on aging, in that they would emphasize
great flexibility of structure and purpose at the local
level, and would encourage innovative service
arrangements that combine public and private sector
resources. The agency would serve all disabled people.
It would provide a core of services for all disabled
adults--e.g., information and referral services and
8
perhaps employment referrals and counselling. It could
disp provide specialized services for special
populations-- e.g. , vocational rehabilitation services for
lighble clients and case management services for
severely disabled people. Probably a parellel agency
should be established to serve the needs of disabled
children and their parents.
To assure the responsiveness of such an agency to
the state and local operating environment and consumer
needs, state and even local advisory committees could be
manuated in the legislation to provide policy guidance to
each agency. NCH could provide that guidance for the
Federal agency.
Pros: The Rehabilitation Act is in place, and could
be relatively easily modified to support a major change
in function and focus. Such a change would rejuvenate
the VR system, provide a logical placement for needs
assessment and planning, and provide the VR system with
an opportunity to radically change its services and image
within the community. A working model is in place (State
and Area Agencies on Aging), and an interagency agreement
should allow the agency to make use of (borrow formats,
adapt, use as models, etc. ) the many materials and
guidelines that have been developed for use with the Area
Agencies on Aging.
Cons: Disabled people reportedly have a low level of
trust and respect for rehabilitation agencies, and
disabled consumers may not support such a proposal
RSA and the VR agencies are well established, and it
would be difficult to change the system to respond to an
entirely new set of goals and purposes. Extensive
reordering of the entire system would be required
Such
an agency would provide and coordinate medical and social
services, and so should not be located in the Department
of Education, which might resist such a change
V. POSSIBLE TOPIC DEVELOPMENT STRATEGY
Present topic to ACCD, DD consortium "round
table", other interested organizations;
constilt with interested congressional staff.
VI. SOURCES OF EXPERTISE/MAJOR STUDIES AND REPORTS
Summary of Existing Legislation Relating to the
Handicapped
9
Review of relevant legislation
WHCHI and NCH reports and recommendations
"Fugitive" studies and documents on coordination
and advocacy--paper on coordination prepared for
WHICHI, description of administrative proposal
for an Administration on Handicapped People
Interviews with knowledgeable individuals
(limited to date because of the political nature
of this topic)
VI SOURCES OF EXPERTISE/MAJOR STUDIES AND REPORTS
Summary of Existing Legislation Relating to the
Handicapped
Review of relevant legislation
WHCHI and NCH réports and recommendations
"Fugitive" studies and documents on coordination
and advocacy--paper on coordination prepared for
WHCHI, description of administrative proposal for
an Administration for Handicapped People
Interviews with knowledgeable individuals
(limited to date because of the
politically-charged nature of this topic)
10
BD #1
Doc. 4
ADMINISTRATION ON DISABILITIES
OVERVIEW
In 1977, Arabella Martinez, then Assistant Secretary for Human Devel-
opment Services in the former Department of Health, Education and Welfare,
took administrative action to create a new Administration for Handicapped
Individuals with responsibility for the Rehabilitation Services Administra-
tion, the Developmental Disabilities Office, the Office for Handicapped
Individuals, the President's Committee on Mental Retardation, the Architec-
tural and Transportation Barrier's Compliance Board, and the White House
Conference on Handicapped Individuals. The newly created Administration
was around for some time, but was never announced in the Federal Register.
It died a quiet death mourned only by those who had recognized its potential
as a Federal focus and coordinating structure in the disability field.
Since then the Office for Handicapped Individuals and the White House
Conference on Handicapped Individuals have disappeared. The Architectural
and Transportation Barriers Compliance Board is now a free-standing Federal
agency. A new entity, the National Institute of Handicapped Research, was
created in 1978.
The Administration on Aging's successful mobilization of interest,
programs and funding in the aging field is a model for the disability
field. The Administration on Aging has a unique network of State and area
agencies that provide statewide planning and provide social services at the
local level, including multi-purpose senior centers with information and
referral services. The estimated outlay for this program in 1984 was
$240,869,000. The closest the disability field has come to this setup is
the Administration on Developmental Disabilities, which was created in
1980. It works with a network of state planning councils which coordinate
services for developmentally disabled persons.
POSSIBLE RECOMMENDATIONS
Restructuring the existing administration of programs would take some
effort. If the Office of Special Education stays in the Department of
Education, special efforts would have to be made to link it with an Admin-
istration on Disabilities in HHS in order not to lose the tenuous connections
with the Rehabilitation Service Administration which have been built on the
insistence of Mrs. Will, Assistant Secretary of Special Education and
Rehabilitative Services. Gains would be made by incorporating the Adminis-
tration on Developmental Disabilities and by formalizing interdepartmental
access to and thereby improved chances for coordination among the Maternal
and Child Health Services' Crippled Children Services in the Bureau of
Health Care Delivery Assistance, the Social Security Administration (SSDI
and SSI programs), the Health Care Financing Administration (Medicare and
Medicaid), the National Institutes of Health, the Alcohol and Drug Abuse
and Mental Health Administration.
EY
A network of state and area offices on disabilities would improve
coordination of services on the state and local level. Some entities on
which such a network could be built are in place: the state level has DD
Planning Councils and Protection and Advocacy Offices; the local level has
Independent Living Centers, which are already in the business of advocacy,
information provision and services.
Disabled persons across the nation have wanted a one-stop contact
point in Washington for a long time. Although an Administration on Disabil-
ities would not solve all their problems, it would have better visibility
than OSERS and would provide broader coverage of the disability field. Its
business would be to link people with services and it could revive the
defunct Clearinghouse on the Handicapped. Such a Clearinghouse would have
ready-made outlets and dissemination channels in the state and area offices
on disabilities, and thereby improve information supply by a quantrum leap.*
* NCH Policy #7.
28
7/31
Helga both
ELC
ROTH
Thoughts on an Administration on Disabilities
Cabinet - level position: The present structure of existing departments
militatesagainst such a concept. Federal departments and agencies are
mission and task oriented not "population served"oriented e.g. education,
housing, labor, transportation, environment etc. The rationale behindit
is probably that this allows programs to be developed aroundthe mission
and development of "experts" in these program areas. The drawback is of
course the segmentation of needs which has often:been decried.
Administration on Disabilities: In the Department of Health and Human
Services there are already several Administrations(on an Assistant Secretary
level) to focusion what is called "vulnerable" populations: children, youth
andfamilies; the aged, native Americans . An Administration on Disabilties
would fit into thispattern. The greatest problem would be what to do with
the Office of Special Education which has always been in the larger context
of education. The Rehabilitation Service Administration certainly fits
HHS better than education andso doesthe NIHR.
Developmental Disabilities : The strong lobby on Developmental Disabilties
has insured the survival of this office andits elevation to an Administra-
tion on DD. The integrity of the DD programs:would have to guaranteed
in an Administration on Disabilities by a separate office on an equal
level with RSA, NIHR. Inspite of the special needs of :the DD population
there are many more communalities with the needs of the disabled popula-
tion at large. If the Administration on Disability is supposed to be
a "coordinator" of disability programs ,the concerns ofthe DD population
has to be part of it.
page 2
ELG
ROTH
Coordination : The original mission of the Office of Handicapped Individuals
(created by the Rehab Act of 1973) was coordination of programs for the
disabled. It failed and disappeared. It failed because it was unable to
rapidly accumulate knowledge of Federal programs (it had a contractor labor
over a compilation for a year or more) , it did nothave the analytical brain
power among itsstaff to pinpoint coordination needs and to select those which
contained some measure of possible success ,would have been politically feasible,
and provide some payoff in thefield
.
But some progress has been made since 1977. Information on legislation and
on existing programs is now available but needs to be digested and prioritized.
An Administration on Disabilities needs to build good contacts to disability
programs not under its control to be aware at all timesof developments and to
be able to voice the desiresof the disabled community at large. To do the
latter equally good links and communication channels have to bebuilt to the
private sector disability organizations and advocates.
A great deal of policy relevant literature has been created since 1977 and
needs to be collected and analyzed. The NIHR has made a few attempts to
broaden its perspectives and look at the disability field in toto and
not merely through the fractionated lenses of its R&T centers. Economics
of Disabilities has been recognized as a major policy relevant issue and
a conference is in the offing. But will there be an impact of such a
conference? - Under past leadership the NIHR was much too absorbed in becoming
a research administering body and within the contraints of OSERS/had very
little opportunity to influence policy.
page 3
AELG
ROTH
Coordination on the state level: there is an obvious lack of a lead program
for the disabled on the statelevel which could or would concern itself with
coordination among the many state level agencies involved with the disabled.
Federal moves for coordination such as between Special Education and Vocational
Rehabilitation (puhsed by Mrs. will) are often not followed or adopted at the
state level. The richest experience available in the states for coordination
rests with the DD Councils and their state administering counterparts since
part of the DD legislation revolves around coordination of services. But if
and how these coordination efforts spill over to the broader disability field
is another question.
At the time of the White House Conference in 1977 there were state-level entities
in the disability field. Some have survived, many fell into disrepair since
there were no Federal directives or Federal money available . Some became
Governor's offices on disability or other advocacy units.
An Administration on Disability could follow themodel ofthe Aging Administration
and create a similar network of state and area offices on disability which
should be moderately funded. These offices could build on the existing Inde-
pendent Living Center and/or the Advocacy and Protection Offices for the
Developmentally Disabled which have already a knowledgeable staff. Such
a network of state and area Offices on Disability would offer close links
to state and local constituencies, andprovide a ready-made outlet for
Federal information for the consumer. Their perspectives of needs and
program success andfailures wouldbe invaluable to the Administration on
Disabilities.