[Federal Register: April 22, 1996 (Volume 61, Number 78)]
[Notices]
[Page 17817-17821]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[[Page 17817]]
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Part VI
Department of Education
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National Institute on Disability and Rehabilitation Research; Proposed
Funding Priority for Fiscal Years 1996-1997; Notice
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research
AGENCY: Department of Education.
ACTION: Notice of Proposed Funding Priority for Fiscal Years 1996-1997
for Rehabilitation Research and Training Centers.
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SUMMARY: The Secretary proposes a funding priority for Rehabilitation
Research and Training Centers (RRTCs) under the National Institute on
Disability and Rehabilitation Research (NIDRR) for fiscal years 1996-
1997. The Secretary takes this action to focus research attention on an
area of national need identified through NIDRR's long-range planning
process. This proposed priority is intended to improve outcomes for
individuals with disabilities.
DATES: Comments must be received on or before May 22, 1996.
ADDRESSES: All comments concerning this proposed priority should be
addressed to David Esquith, U.S. Department of Education, 600
Independence Avenue, S.W., Switzer Building, Room 3424, Washington,
D.C. 20202-2601.
FOR FURTHER INFORMATION CONTACT: David Esquith. Telephone: (202) 205-
8801. Individuals who use a telecommunications device for the deaf
(TDD) may call the TDD number at (202) 205-8133. Internet:
David__Esquith@ed.gov
SUPPLEMENTARY INFORMATION: This notice contains one proposed priority
under the RRTC program. The proposed priority is for research related
to health care for individuals with disabilities.
Authority for the RRTC program of NIDRR is contained in section
204(b)(2) of the Rehabilitation Act of 1973, as amended (29 U.S.C. 760-
762). Under this program the Secretary makes awards to public and
private organizations, including institutions of higher education and
Indian tribes or tribal organizations for coordinated research and
training activities. These entities must be of sufficient size, scope,
and quality to effectively carry out the activities of the Center in an
efficient manner consistent with appropriate State and Federal laws.
They must demonstrate the ability to carry out the training activities
either directly or through another entity that can provide such
training.
The Secretary may make awards for up to 60 months through grants or
cooperative agreements. The purpose of the awards is for planning and
conducting research, training, demonstrations, and related activities
leading to the development of methods, procedures, and devices that
will benefit individuals with disabilities, especially those with the
most severe disabilities.
This proposed priority supports the National Education Goal that
calls for all Americans to possess the knowledge and skills necessary
to compete in a global economy and exercise the rights and
responsibilities of citizenship.
Under the regulations for this program (see 34 CFR 352.32) the
Secretary may establish research priorities by reserving funds to
support particular research activities.
NIDRR is in the process of developing a revised long-range plan.
The priority proposed in this notice is consistent with the long-range
planning process.
Description of the Rehabilitation Research and Training Center Program
RRTCs are operated in collaboration with institutions of higher
education or providers of rehabilitation services or other appropriate
services. RRTCs serve as centers of national excellence and national or
regional resources for providers and individuals with disabilities and
the parents, family members, guardians, advocates or authorized
representatives of the individuals.
RRTCs conduct coordinated and advanced programs of research in
rehabilitation targeted toward the production of new knowledge to
improve rehabilitation methodology and service delivery systems,
alleviate or stabilize disabling conditions, and promote maximum social
and economic independence of individuals with disabilities.
RRTCs provide training, including graduate, pre-service, and in-
service training, to assist individuals to more effectively provide
rehabilitation services. They also provide training including graduate,
pre-service, and in-service training, for rehabilitation research
personnel and other rehabilitation personnel.
RRTCs serve as informational and technical assistance resources to
providers, individuals with disabilities, and the parents, family
members, guardians, advocates, or authorized representatives of these
individuals through conferences, workshops, public education programs,
in-service training programs and similar activities.
NIDRR encourages all Centers to involve individuals with
disabilities and minorities as recipients in research training, as well
as clinical training.
Applicants have considerable latitude in proposing the specific
research and related projects they will undertake to achieve the
designated outcomes; however, the regulatory selection criteria for the
program (34 CFR 352.31) state that the Secretary reviews the extent to
which applicants justify their choice of research projects in terms of
the relevance to the priority and to the needs of individuals with
disabilities. The Secretary also reviews the extent to which applicants
present a scientific methodology that includes reasonable hypotheses,
methods of data collection and analysis, and a means to evaluate the
extent to which project objectives have been achieved.
The Department is particularly interested in ensuring that the
expenditure of public funds is justified by the execution of intended
activities and the advancement of knowledge and, thus, has built this
accountability into the selection criteria. Not later than three years
after the establishment of any RRTC, NIDRR will conduct one or more
reviews of the activities and achievements of the Center. In accordance
with the provisions of 34 CFR 75.253(a), continued funding depends at
all times on satisfactory performance and accomplishment.
General
The Secretary proposes that the following requirements will apply
to all of the RRTCs pursuant to the priority:
Each RRTC must conduct an integrated program of research to develop
solutions to problems confronted by individuals with disabilities.
Each RRTC must conduct a coordinated and advanced program of
training in rehabilitation research, including training in research
methodology and applied research experience, that will contribute to
the number of qualified researchers working in the area of
rehabilitation research.
Each Center must disseminate and encourage the use of new
rehabilitation knowledge. They must publish all materials for
dissemination or training in alternate formats to make them accessible
to individuals with a range of disabling conditions.
Each RRTC must involve individuals with disabilities and, if
appropriate, their family members, as well as rehabilitation service
providers in planning and implementing the research and training
programs, in interpreting and disseminating the research findings, and
in evaluating the Center.
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Priorities
Under 34 CFR 75.105(c)(3) the Secretary gives an absolute
preference to applications that meet the following proposed priority.
The Secretary will fund under this competition only applications that
meet this absolute priority:
Proposed Priority: Health Care for Individuals with Disabilities--
Issues in Managed Care
Background
Individuals with disabilities have a vital interest in high quality
health care, and important interests in the reshaping of the health
care delivery system. To begin, they are higher than average users of
health services (NMES, 1987), and are more likely to be dependent on
quality health care services to prevent secondary disabilities and
maintain quality of life. Individuals with disabilities are more likely
to be insured under public programs--Medicare and Medicaid--and thus
are particularly concerned with the directions of public policy in
these programs (LaPlante, 1996). Individuals with disabilities are more
likely to be dependent on their health care programs for a wide range
of services intended to assure their quality of life and independence,
particularly as health care insurers usually control access to funding
for personal assistance services and assistive technology.
The central health care issue for individuals with disabilities is
access to appropriate, high quality health care. Appropriate care must
be timely, of high quality, in sufficient quantity, and accessible both
physically and programmatically. For individuals with disabilities,
appropriate care also generally implies an integrated continuum of care
as necessary, and consumer involvement in the care decisions and
implementation. A comprehensive continuum of care, including primary
care, acute care, rehabilitation, and long-term care, is key to any
health care delivery system for individuals with disabilities.
The health care needs of individuals with disabilities differ from
those of the general population in many important aspects (DeJong,
1995). They are at greater risk of acquiring certain medical
conditions, often experience these conditions differently, and may
require a more extensive therapeutic intervention. Individuals with
disabilities often are vulnerable to secondary conditions that may
exacerbate the original disability. For this reason, as well as for
costs related to the original impairment, persons with disabilities are
likely to need more health care and thus to be particularly affected by
cost constraints that may affect the volume or quality of services
available.
In recent years there has been a significant change in the way
health care is delivered and reimbursed. Historically, most of the
insured population (including individuals with disabilities) received
their health care through fee-for-service health care plans. However,
various forms of managed care increasingly are the typical mode of
organizing and delivering health care in the private sector, and
segments of the Medicaid and Medicare populations have been enrolled in
managed care plans. There are many varieties of managed care, ranging
from the model of a case manager in a fee-for-service system, through
preferred provider arrangements, to the HMO. Regardless of how managed
care is operationalized, the essential features are that it is a cost-
driven model paid for by a capitation method with strict controls on
the volume and costliness of services to be provided to an individual
with a given diagnosis. While traditional fee-for-service systems were
said to reward the provider in direct proportion to the amount of
services rendered, i.e., more services given equals more fees
collected, managed care operates with an opposite set of incentives,
often rewarding the provider for such things as low average costs, or
fewer than average patient visits per diagnostic category. The provider
in turn manages the care of the patient through gatekeeping practices
that individuals with disabilities fear may limit access to specialists
or higher-cost services. One challenge in improving health care for all
individuals is to change the incentive-reward systems for gatekeepers,
and all providers, from those based on cost savings to those based on
quality of outcomes achieved.
A managed care system, particularly one without the funding
constraints typically imposed by capitated managed care, has ideal
elements of a system of care for individuals with disabilities. These
elements include case management, with an opportunity for the primary
care provider or case manager to become familiar with the needs of the
individual consumer; coordination of interventions of a variety of
specialists; often a single location that increases the physical
accessibility of a variety of services and specialists; preventive
health care; health education; coordination of medications; a frequent
preference for alternative or holistic therapies (such as stress
reduction, nutritional education, or exercise) over more invasive
procedures that many consumers resent; and a central focus for quality
assurance and consumer input.
The American Hospital Association has stated that, managed care is
based on the premise that the majority of the health care services
delivered in the United States are most appropriately delivered and
managed by primary care physicians (HIAA, 1993). While this is not an
exact description of the existing practices, it is an indicator of the
importance of the primary care provider in the managed care model. The
primary care physician (or nurse, physicians' assistant, or other
triage personnel) determines the need for primary care and makes
referrals as specialized care or hospitalization are needed, and thus
controls not only the delivery of primary care but entry into other
services.
However, individuals with disabilities have long been concerned
about a lack of appropriate primary care, and are increasingly
apprehensive about effects of capitated systems on the quantity and
quality of care that will be available to them. As managed care becomes
more frequent as a mechanism for delivering health care, primary care
providers become even more critical to the disabled individual because
of their typical roles in the managed care system, determining
referrals to specialists as well as delivering primary care.
Batavia and others have written about the practice of individuals
with disabilities educating primary care providers in the medical
implications of their impairments, and have discussed the generally
unsatisfactory nature of the primary care available to individuals with
disabilities (Batavia, DeJong, Halstead, and Smith, 1989).
The role of the gatekeeper--usually the primary care provider--in
managed care is a critical one for individuals with disabilities. That
manager not only may have an incentive to limit access to services, but
also may lack competence in assessing the needs of disabled individuals
with various impairments or chronic conditions.
At present, most insured individuals with disabilities are
enrolled--under Medicaid or Medicare--in fee-for-service programs,
where they have some latitude in choosing providers and may often elect
to see rehabilitation specialists for routine and preventive care.
Within this market system, it has become common for rehabilitation
medicine specialists, and rehabilitation hospitals, to provide primary
care. Many disabled individuals choose to return to rehabilitation
specialists who
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are familiar with their conditions and have wide experience in the
treatment of individuals with similar conditions for both routine
preventive care and for treatment of occasional illnesses or injuries.
Of course, not all disabled individuals seek primary care from
rehabilitation specialists and teaching hospitals.
Similarly, it must be noted that not all individuals with
disabilities require special health care arrangements different from
those of the general population. It is also probable that special
requirements of many groups of disabled individuals can be met by
accommodations and attention to accessibility within mainstream
programs. At present, there is no satisfactory method for identifying,
or even accurately estimating the numbers of, those disabled
individuals in the total population whose health care needs cannot be
met through standard managed health care plans. Most studies of managed
care for individuals with disabilities are based on SSI or SSDI
recipients who are enrolled in Medicaid. However, Medicaid eligibility
is not a satisfactory proxy for the target population of this Center,
which is addressing all individuals with disabilities who require
alternative health care delivery approaches. Identifying the target
population based on high volume service usage is also unsatisfactory
because many individuals with disabilities may use few medical
services, but still require special knowledge or accommodations when
they do access the health care system.
Individuals with disabilities, as potential plan enrollees, are
concerned about cost containment strategies such as capitation, which
have the financial incentive to deliver fewer services. There are also
incentives to avoid high-risk enrollees, and to establish policies and
practices that discourage the enrollment of high users. Examples of
these practices discussed by Kronick (1995) in his concise description
of this problem include: screening for pre-existing conditions,
designing service packages to discourage potential enrollees with
certain conditions, terminating of subscribers, discouraging service
use by making access difficult, and encouraging disenrollment. Kronick
proceeds to list a series of strategies designed to compensate for the
intensely risk aversive nature of managed care programs, and these
techniques are deserving of thorough evaluation in a variety of
settings.
There are at present a number of alternative models for the
delivery of health care services to populations with special health
care needs other than the traditional fee-for-service approach. These
include the social HMOs; managed care carve outs; centers of excellence
and university-based medical centers; special demonstration programs
that may be conducted in connection with centers for independent living
or other disability organizations; designation of rehabilitation
medicine specialists as primary care providers or case managers; so-
called disease management models designating special elements of care
based on diagnostic category; model systems of comprehensive care;
special education efforts directed at primary care providers; and more
traditional limited risk models based on principles of reinsurance. The
suitability of these alternative models may vary by the type of
impairment, age of the consumer, geographic location, and many other
factors. In recent years there have been many innovative delivery
models tested (Community Medical Alliance in Boston, extensively
documented by Alan Meyers and Robert Masters; the On Loc project in San
Francisco for elderly medically fragile and chronically ill persons;
and the PACE project, for example). However, more needs to be done to
investigate the applicability of a variety of models to a range of
populations, especially to working age adults, to disabled individuals
who are employed, and to those covered by private health insurance.
Finally, individuals with disabilities are concerned about the
physical and programmatic accessibility of health care and with their
own roles in maintaining health. Individuals with disabilities, and
their organizations, are learning to take an active role in the choice
and management of the services they receive. Health care is one of the
most critical areas for individuals with disabilities to be informed
consumers. In some cases, individuals with disabilities will have a
choice among benefit plans or service providers under managed care. In
all cases they need the option of an informed and active role in their
individual health care, including understanding of risks and benefits,
choice of optional treatments, and an opportunity to provide care
system. A second focus group identified a number of issues in managed
care from the perspective of individuals with disabilities.
The primary Federal responsibility for health care services and
research is with the Department of Health and Human Services (HHS).
Several units of HHS, particularly the Public Health Service, the
Health Care Financing Administration, the Office of the Assistant
Secretary for Planning and Evaluation (ASPE), and the Administration on
Aging are establishing significant programs of research into managed
care for vulnerable populations. NIDRR plans to continue collaboration
with HHS, and expects any Center funded under this priority to work
closely with HHS grantees.
However, NIDRR also has had a long history of support for medical
rehabilitation research and demonstrations of model systems of care. In
addressing its research mission, NIDRR has been impressed by the
importance of health care to rehabilitation and independence, as well
as by the high value individuals with disabilities attach to access to
comprehensive, high-quality, consumer-responsive health care. In 1991,
NIDRR supported a planning conference to set a long-term agenda for
medical and health research in NIDRR. The conferees recommended four
areas of focus: trauma care; medical rehabilitation; primary care; and
long-term care.
Consistent with this agenda, NIDRR is supporting a number of RRTCs
that address research issues related to trauma care, medical
rehabilitation, and long-term care. In order to identify significant
research issues related to primary care for individuals with
disabilities, NIDRR convened a focus group of researchers, consumers,
and service providers. Within the context of primary care, the group's
most significant area of concern was managed care, including the role
of primary care and of medical rehabilitation in the managed care
system. A second focus group identified a number of issues in managed
care from the perspective of individuals with disabilities.
NIDRR's proposed priority on issues in managed care focuses on
accessibility, consumer-responsiveness, the role of consumers and
consumer organizations (e.g., Independent Living programs) in health
maintenance and in the evaluation of managed care plans, and the role
of rehabilitation medicine. In addition, the priority expands the
target population of related research efforts that focus primarily on
publicly financed systems to include individuals covered by private
health plans and individuals without health care coverage. The research
undertaken by this Center is expected to complement, supplement, or
confirm studies sponsored by HHS.
The Secretary is interested in research that will identify the
characteristics of a managed health care system that is responsive to
the needs of individuals with disabilities, including research on
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the effects of managed care on individuals with disabilities. For the
purposes of this proposed priority, an individual with a disability is
defined as one who has a physical or mental impairment that
substantially limits one or more major life activities (Rehabilitation
Act of 1973, section 7(8)(B)). One function of the proposed RRTC will
be to develop a definition and parameters to identify those individuals
whose disabilities necessitate special health care arrangements in a
managed care system.
Priority
The Secretary proposes to establish an RRTC to conduct research
that will contribute to the development of consumer-responsive managed
health care that encompasses the continuum of care needed by
individuals with disabilities whose health care needs require special
attention under managed care and will provide information and training
to service providers and individuals with disabilities on new
developments in managed care systems and their implications for
individuals with disabilities.
In addition to activities proposed by the applicant to fulfill this
general purpose, the proposed RRTC shall:
* Develop a method for identifying those individuals with
disabilities, using diagnostic and functional criteria, whose health
care needs require special approaches under managed care;
* Analyze existing data related to alternative health
delivery approaches, including carve out models, disease management
models, and models combining acute and long-term services in order to:
(1) identify critical elements (such as capitation formulas, incentive
rewards, or service packages) that enhance the application of
traditional managed care models to individuals with disabilities; and
(2) identify gaps in the data to be addressed by future research;
* Review existing or emerging industry quality assurance
standards in relation to the needs of individuals with disabilities,
and develop recommended quality indicators for this population;
* Design programs to prepare individuals with disabilities
to be educated consumers of health care, using consumer organizations
in this effort;
* Serve as a center of information for policy makers,
researchers, and individuals with disabilities about new developments
in managed care, integrating the perspective of individuals with
disabilities into the national discussion of managed care, and conduct
at least two conferences on emerging issues in research on managed care
for individuals with disabilities; and
* Establish and work with an Advisory Committee whose
members include relevant Federal and other public agencies (e.g.,
relevant units of the Department of Health and Human Services and the
Public Health Service), key managed care representatives from the
private sector, individuals with disabilities, and other NIDRR centers
addressing related issues.
Invitation to Comment
Interested persons are invited to submit comments and
recommendations regarding these proposed priorities. All comments
submitted in response to this notice will be available for public
inspection, during and after the comment period, in Room 3423, Mary
Switzer Building, 330 C Street S.W., Washington, D.C., between the
hours of 8:00 a.m. and 3:30 p.m., Monday through Friday of each week
except Federal holidays.
Applicable Program Regulations: 34 CFR Parts 350 and 352.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Program Number 84.133B,
Rehabilitation Research and Training Centers)
Dated: April 5, 1996.
Howard R. Moses,
Acting Assistant Secretary for Special Education and Rehabilitative
Services.
[FR Doc. 96-9819 Filed 4-19-96; 8:45 am]
BILLING CODE 4000-01-P