[Federal Register Volume 61, Number 132 (Tuesday, July 9, 1996)]
[Notices]
[Pages 36270-36275]
From the Federal Register Online via the Government Publishing Office [www.gpo.gov]
[FR Doc No: 96-17456]
[[Page 36269]]
_______________________________________________________________________
Part VIII
Department of Education
_______________________________________________________________________
Final Funding Priority for Fiscal Years 1996-1997 for a Rehabilitation
Research and Training Center; Inviting Applications for a New Award
Under the Rehabilitation Research and Training Center Program for
Fiscal Year 1997; Notices
Federal Register / Vol. 61, No. 132 / Tuesday, July 9, 1996 / Notices
[[Page 36270]]
DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research;
Notice of a Final Funding Priority for Fiscal Years 1996-1997 for a
Rehabilitation Research and Training Center
AGENCY: Department of Education.
SUMMARY: The Secretary announces a final funding priority for the
Rehabilitation Research and Training Center (RRTC) Program 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 areas of national need. This priority is intended
to improve rehabilitation services and outcomes for individuals with
disabilities.
EFFECTIVE DATE: This priority takes effect on August 8, 1996.
FOR FURTHER INFORMATION CONTACT:
Betty Jo Berland, U.S. Department of Education, 600 Independence
Avenue, S.W., Switzer Building, Room 3424, Washington, D.C. 20202-2601.
Telephone: (202) 205-9739. Individuals who use a telecommunications
device for the deaf (TDD) may call the TDD number at (202) 205-8133.
Internet: Betty-Jo-Berland@ed.gov.
SUPPLEMENTARY INFORMATION: This notice contains a final funding
priority to establish an RRTC for research related to managed health
care for individuals with disabilities.
NIDRR is in the process of developing a revised long-range plan.
The final funding priority in this notice is consistent with the long-
range planning process. This final funding 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.
Note: This notice of final funding priority does not solicit
applications. A notice inviting applications under this competition
is published in a separate notice in this issue of the Federal
Register.
On April 22, 1996, the Secretary published a notice of proposed
priority in the Federal Register (61 FR 17818-17821). The Department of
Education received nineteen letters commenting on the notice of
proposed priority by the deadline date. Three additional comments were
received after the deadline date and were not considered in this
response. Technical and other minor changes--and suggested changes the
Secretary is not legally authorized to make under statutory authority--
are not addressed. All of the comments supported the need for the
proposed RRTC, and some made suggestions for modifications to the
Rehabilitation Research and Training Center (RRTC) in managed care.
Analysis of Comments and Changes
The following paragraphs first discuss those comments that pertain
to the priority as a whole, and then discuss those that address the
specific activities, or ``bullets'', within the priority.
General Comments
Comment: One commenter suggested that the center grant be awarded
to an institution that specializes in serving the health care needs of
children, and another suggested that the health care of children with
disabilities should be a central focus of the RRTC.
Discussion: The Secretary cannot limit the field of eligible
applicants beyond that authorized by the statute and program
regulations, which permit any organization operating in affiliation
with an institution of higher education or a provider of rehabilitation
or other appropriate services to apply for the Center grant.
Furthermore, because the Bureau of Maternal and Child Health in the
Department of Health and Human Services (HHS) has developed an
extensive agenda for research on managed health care for children with
disabilities, the Center to be funded under this priority is directed
toward health care needs of adults.
Changes: None.
Comment: A number of commenters urged that the priority require the
Center to include a focus on certain subpopulations of individuals with
disabilities, such as children or adolescents, the elderly, residents
of rural areas, or persons with specific types of disabling conditions.
Discussion: The Secretary believes that this should be a cross-
disability study, with a unique emphasis on working age adults.
Applicants are not precluded from addressing the health care needs of
any groups of individuals with disabilities, but due to the scope and
complexity of the issue of managed care, and the need to respond to
unanticipated developments in health care delivery, the Secretary
elects not to require all applicants to structure research programs
that focus on particular subgroups.
Changes: None.
Comment: Several commenters suggested the addition or further
specification of various requirements to the work scope of the Center,
including: studies of specific health care services; educational
programs for specific categories of professional service providers;
focus on rural health care delivery; models for services to individuals
with comorbidities; transition from pediatric to adult care; and
examination of comparable benefits between health care and vocational
rehabilitation funding streams.
Discussion: The Secretary believes that many of the suggested
additional requirements are important studies, but points out that this
RRTC will not have unlimited resources, and that researchers should
have flexibility to choose the optimum approach to addressing the
general challenges of the priority, as well as addressing the other
specific requirements of the priority. The Secretary believes that many
of these specific suggestions could be addressed by an applicant in
responding to this priority, but the Secretary declines to require them
of all applicants.
There is a growing body of research on issues of managed health
care for persons with disabilities being conducted by various Federal
agencies, and there are other ongoing or planned studies that may
provide appropriate venues for addressing many of these additional
questions. The Secretary reminds potential applicants that some of
these problems may be addressed, with appropriate coordination with the
RRTC, in discrete studies under NIDRR's Field-Initiated Research
program.
Changes: None.
Comment: One commenter suggested that the proposed RRTC should be a
resource for disseminating new health policy analysis methods from
other medical specialties into the rehabilitation medicine specialty.
Discussion: The Secretary does endorse the use of the best and most
appropriate methods of health care analysis in the field of medical
rehabilitation. However, the Secretary points out that the primary
purpose of this Center is not the improvement of medical
rehabilitation, but rather the improvement of the managed care delivery
system, with a focus on primary care, acute care, and long-term care,
as well as on rehabilitative care. NIDRR currently funds an RRTC on
medical rehabilitation research and expects to announce a competitive
priority to continue research in this area in fiscal year 1997.
Therefore, the Secretary believes that this activity would not be an
appropriate use of resources in this Center.
Changes: None.
Comment: One commenter suggested that NIDRR use the term
``significant disability'' and the definition of that term contained in
the Americans with
[[Page 36271]]
Disabilities Act to define the target population of this Center.
Discussion: NIDRR is authorized and funded under the Rehabilitation
Act of 1973, as amended and therefore must relate its activities to
persons who have disabilities as defined by the Rehabilitation Act.
Changes: None.
Comment: Two commenters expressed the opinion that the Background
statement did not make it clear that physiatrists provided primary care
by default, and not because of a professional mission or obligation to
do so.
Discussion: The Secretary intended that the priority convey the
relationship between the lack of informed primary care for individuals
with disabilities and the demand for rehabilitation medicine
professionals to fill this void. Provision of primary care by
rehabilitation medicine providers, including physiatrists, has been, at
least to date, by default rather than by design. However, because the
information was contained in the Background statement as descriptive
information, and would not affect directly the activities to be
performed under the grant, no changes are made.
Changes: None.
Comment: One commenter suggested that the priority should focus on
older as well as working age adults with disabilities, because of the
similarity of health care concerns in areas such as prevention of
secondary conditions and quality of life.
Discussion: The Secretary agrees that managed care for older
individuals with disabilities is an important area. However, as the
priority states, there is considerable research supported by HHS on
managed care in elderly populations, most of whom are enrolled in
Medicare. Working age individuals with disabilities have some unique
concerns with the health care delivery system, for example, the
availability of coverage and the scope of services covered by
commercial insurance. These individuals are more likely to need family
coverage or support for technologies and services related to
employment. Thus, the Secretary believes that the needs of working age
disabled persons should be the primary focus of this Center. The health
care needs of working age disabled persons under managed care is an
area that is not adequately addressed at present. In addition, this is
an area in which NIDRR has unique responsibilities and the ability to
make a significant contribution to the overall managed health care
policy debate.
Changes: None.
Comment: Several commenters discussed the significance of the ways
in which ``auxiliary'' services such as technology, personal assistance
services (PAS) or long-term care, transportation, and housing are
handled in a health services plan, and urged focus on this issue.
Discussion: The proposed priority does reference the continuum of
care, PAS, and access to technology as components of a health care
system for individuals with disabilities. The Secretary believes that
the priority is explicit in requiring attention to a comprehensive
continuum of care.
Changes: None.
Comments: One commenter, representing the Administration on Aging
(AoA), stated that the AoA sponsored only a limited amount of research
on managed care, rather than the ``significant program'' referred to in
the Background statement.
Discussion: The Secretary agrees to describe the research program
of the AoA in the terms suggested by that agency.
Changes: The AoA has been dropped from the listing of agencies that
are establishing significant programs of research into managed care,
and a separate sentence has been added stating that ``managed care
research also is being conducted by the Administration on Aging.
Comments on the First Required Activity
Comment: Two commenters expressed the opinion that the first
prescribed activity of developing a method to identify individuals
whose health care needs require special approaches under managed care
would be difficult to accomplish. At the same time, several commenters
suggested that the priority could be strengthened by adding an
evaluation of the experiences of individuals with diverse types of
disabilities under various models of managed care and fee-for-service
care. Another commenter suggested that coordination with the National
Committee on Vital and Health Statistics (NCVHS), which is leading an
effort to develop voluntary standardized sets of disability descriptors
for health encounters, would be useful to the Center in its efforts to
develop methods to identify individuals with disabilities who need
special health care approaches.
Discussion: The Secretary believes that a prerequisite to designing
a comprehensive health care system is an understanding of what
populations of disabled individuals are likely to need special
arrangements under managed health care, and to have some parameters for
describing and identifying that population. The Secretary agrees with
the commenters that a definitive understanding of the pertinent
experiences of individuals with disabilities under various types of
managed care as well as under traditional approaches would be useful to
the Center in determining the characteristics of persons likely to need
special managed care arrangements.
Changes: The first bullet has been revised to encompass an
assessment of managed care and fee-for-service care experiences of
individuals with disabilities, and to include coordination with the
NCVHS and other large-scale efforts to routinize the collection of
disability-related information in health care records.
Comments on the Second Required Activity
Comment: One commenter stated that the requirement in the second
bullet to use existing data may be unrealistic, due to the absence or
unavailability of the types of data that might be needed. The commenter
suggested a revision to require the use of existing data only ``where
possible.'' One commenter suggested that the priority should require
the center, working with other researchers and government agencies, to
develop both qualitative and quantitative research examining the impact
of managed care arrangements on quality of care, cost of care, and
access to specialty providers, and to identify gaps in training as well
as gaps in research, as currently required.
Discussion: The Secretary suggested the use of existing data as a
means of achieving economy and efficiency. The Secretary agrees that
applicants should not be restricted in their approach to answering
important research questions, as long as they demonstrate that they are
using the most efficient means. The Secretary believes that the
parameters of quality, cost, and access to specialists are critical
elements in assessing the impact of managed care on individuals with
disabilities, and that coordinated activity is desirable in studying
these factors.
Changes: The second bullet has been revised to include the words
``where possible'', and to stress coordinated qualitative and
quantitative research on the impact of managed care.
Comments related to the third required activity
Comment: Several commenters suggested a stronger emphasis on the
involvement of consumers, particularly in the development of quality
indicators
[[Page 36272]]
for managed health care programs and providers. Two commenters also
pointed out that there are current efforts of the National Committee
for Quality Assurance (NCQA), the Robert Wood Johnson Foundation (RWJ),
and the Assistant Secretary for Planning and Evaluation (ASPE) in the
Department of Health and Human Services (ASPE) in this area, and urged
that the Center be required to coordinate with those efforts.
Discussion: The Secretary agrees that individuals with disabilities
and their families, where appropriate, must be involved in all phases
of the Center's activities and further agrees to emphasize the need for
this involvement in the development of quality indicators, and also
that coordination with other national efforts is essential.
Changes: The third priority requirement has been revised to include
an emphasis on consumer involvement and also coordination with other
national efforts in the development of standards.
Comments on the fourth required activity
Comment: One commenter suggested that this activity should
emphasize the involvement of consumer and organizations representing
consumers in the development of these educational programs, while
another commenter stated that the priority should state explicitly that
the educational programs should also be implemented. A third commenter
suggested that the training programs should be based on an evaluation
of the factors likely to influence health plan decision-making by
individuals with disabilities. One commenter suggested that the Center
should work with NIDRR and other Federal planning and demonstration
offices in designing consumer education programs.
Discussion: The Secretary agrees that consumers must be involved in
the development of the educational programs, as in all phases of the
Center's activities, and also that they should be involved in the
implementation. The Secretary also agrees that the educational program
should be knowledge-based, but declines to specify what type of
research should be conducted to ascertain the necessary knowledge. The
Secretary emphasizes that the Center will be required to work with
NIDRR and with a range of Federal planning agencies and their grantees
on all phases of the Center's activities, and does not want to suggest
that it is more important on this particular bullet.
Changes: The fourth bullet is revised to note the need to involve
consumers and their organizations in the development of the training,
and the need to implement the training with their involvement. The
bullet also requires that the educational programs be based on a
knowledge of consumer training needs.
Comments on the sixth required activity
Comment: One commenter suggested that the Center be required to
attend the two-day National Conference on Managed Care and People with
Disabilities that will be sponsored by the Department of Health and
Human Services, and integrate the conference's research and training
recommendations into its goals and directions. One commenter suggested
that the Department of Veterans Affairs be added to the list of
coordinating agencies, while others recommended coordination with the
Robert Wood Johnson (RWJ) foundation and with offices of HHS is
addition to those named in the priority. A commenter suggested that the
Center be required to coordinate with NIDRR's Model Systems in Spinal
Cord Injury, Traumatic Brain Injury, and Burns to make use of
information available from those systems. One commenter suggested that
parents and family care givers should be represented on the Advisory
Board.
Discussion: The Secretary agrees that all of these are excellent
suggestions. The Secretary has the flexibility to address the issue of
attendance at the National Conference in the negotiation of the grant
award. However, the Secretary does not want to prescribe the ways in
which the Center must meet the requirements to represent consumers on
the advisory board, and prefers to permit each applicant to propose how
it will meet that requirement. With respect to other Federal agencies,
the Secretary believes that the Department of Veterans Affairs will be
a source of information, as will many units of HHS in addition to those
named in the priority. Among private sector sponsors of health care
research, the RWJ Foundation merits special inclusion because of its
extensive body of research on managed care and disability and on
consumer directed activities of personal assistance services and
independent living. However, the Secretary believes that the priority
as written, along with this discussion, provides sufficient guidance to
applicants on the need to develop a substantial advisory committee with
a wide scope of interests. The Secretary believes that each applicant
should have the freedom within that framework to propose and defend an
Advisory Committee on its own choosing.
Changes: None.
Rehabilitation Research and Training Centers (RRTCs)
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.
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.
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
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services. They also provide training including graduate, pre-service,
and in-service training, for rehabilitation research personnel and
other rehabilitation personnel.
RRTCs serves 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 hypothese,
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 following requirements apply to this RRTC pursuant to the
priority unless noted otherwise:
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.
Priorities
Under 34 CFR 75.105(c)(3), the Secretary gives an absolute
preference to applications that meet the following priority. The
Secretary will fund under this competition only applications that meet
this absolute priority:
Priority: Health Care for Individuals with Disabilities--Issues in
Managed Health 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
[[Page 36274]]
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 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 with 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 designated 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 care 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
[[Page 36275]]
their individual health care, including understanding of risks and
benefits, choice of optional treatments, and an opportunity to provide
care systems. 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, and the Office of the Assistant
Secretary for Planning and Evaluation (ASPE), are establishing
significant programs of research into managed care for vulnerable
populations. The Administration on Aging also conducts research on
managed care: 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 of 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 funding 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 the
effects of managed care on individuals with disabilities. For the
purposes of this funding 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 funding 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 intends 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 carrying out activities to fulfill this general
purpose, the RRTC shall:
Conduct a study assessing the impact of managed care on
individuals with disabilities, by type of disability and social and
demographic characteristics, examining such factors as quality of care,
costs of care, access to specialty providers, service utilization, and
preventive care, and develop, using the findings of this study, a
method for identifying those individuals with disabilities whose health
care needs require special approaches under managed care;
Using existing data where possible, analyze 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, in cooperation with efforts sponsored by the NCQA,
ASPE, and the Robert Woods Johnson Foundation, existing or emerging
industry quality assurance standards in relation to the needs of
individuals with disabilities, and develop and recommended quality
indicators for this population, involving individuals with disabilities
in this effort;
Design, based on new or existing research about consumer
training needs, and with the involvement of individuals with
disabilities, programs to prepare individuals with disabilities to be
educated consumers of health care, and implement these training
programs, 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 national conferences on emerging issues in research on
managed care for individuals with disabilities, researchers, and
service providers; 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,
including ASPE, HCFA, AoA, and the Public Health Service, and the
Department of Veteran's Affairs), foundations such as RWJ, key managed
care representatives from the private sector, individuals with
disabilities, and other NIDRR centers and projects addressing related
issues.
Program Regulations: 34 CFR Parts 350 and 352.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Number: 84.133B,
Rehabilitation Research and Training Center Program)
Dated: July 3, 1996.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 96-17456 Filed 7-8-96; 8:45 am]
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