[Federal Register: April 22, 1996 (Volume 61, Number 78)]
[Page 17817-17821]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]

[[Page 17817]]


Part VI

Department of Education


National Institute on Disability and Rehabilitation Research; Proposed 
Funding Priority for Fiscal Years 1996-1997; Notice

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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.


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: 

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 
    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.


    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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    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


    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 
    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 
    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 
    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

[[Page 17821]]

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.


    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 
[FR Doc. 96-9819 Filed 4-19-96; 8:45 am]