[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]]


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Part VIII





Department of Education





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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-B[email protected].

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

[[Page 36273]]

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]
BILLING CODE 4000-01-P-M