[Federal Register: February 21, 1997 (Volume 62, Number 35)]
[Notices]
[Page 8129-8137]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[[Page 8129]]
_______________________________________________________________________
Part III
Department of Education
_______________________________________________________________________
National Institute on Disability and Rehabilitation Research; Final
Funding Priorities for Fiscal Year 1997-1998; and Applications for New
Awards Under Certain Programs for Fiscal Year 1997; Notices
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research
AGENCY: Department of Education.
ACTION: Notice of Final Funding Priorities for Fiscal Years 1997-1998
for a Research and Demonstration Project and Rehabilitation Research
and Training Centers.
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SUMMARY: The Secretary announces final funding priorities for the
Research and Demonstration Project (R&D) Program and the Rehabilitation
Research and Training Center (RRTC) Program under the National
Institute on Disability and Rehabilitation Research (NIDRR) for fiscal
years 1997-1998. The Secretary takes this action to focus research
attention on areas of national need consistent with NIDRR's long-range
planning process, to improve rehabilitation services and outcomes for
individuals with disabilities, and to assist in the solutions to
problems encountered by individuals with disabilities in their daily
activities.
EFFECTIVE DATE: These priorities take effect on March 24, 1997.
FOR FURTHER INFORMATION CONTACT: David Esquith. Telephone: (202) 205-
8801. Individuals who use a telecommunications device for the deaf
(TDD) may call the TDD number at (202) 205-8133. Internet:
David__Esquith@ed.gov.
SUPPLEMENTARY INFORMATION: This notice contains final priorities to
establish one R&D project for research on improving employment
practices covered by Title I of the Americans with Disabilities Act
(ADA), and two RRTCs for research related to personal assistance
services (PAS) and employment for persons with long-term mental illness
(LTMI).
NIDRR is in the process of developing a revised long-range plan.
The final priorities in this notice are consistent with the long-range
planning process. These final priorities support 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 priorities does not solicit
applications. A notice inviting applications under these
competitions is published in a separate notice in this issue of the
Federal Register.
Analysis of Comments and Changes
On October 31, 1996, the Secretary published a notice of proposed
priorities in the Federal Register (61 FR 56374-56379). The Department
of Education received 9 letters commenting on the notice of proposed
priorities by the deadline date. Two 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.
Research and Demonstration Projects Program
Priority: Improving Employment Practices Covered by Title I of the
Americans With Disabilities Act
Comment: One commenter recommended that the grantee should research
the practices and procedures businesses have used to create a diverse
work force and the attitudinal factors that affect hiring and
employment decisions regarding persons with disabilities.
Discussion: The Secretary believes that research on the practices
and procedures business have used to create a diverse work is an
important, but overly broad, topic that addresses issues unrelated to
those involving persons with disabilities. As indicated in the
background to the priority, the Secretary believes that a sufficent
body of attitudinal research exists, including attitudinal research on
the factors that affect hiring and employment decisions regarding
persons with disabilities. The Secretary does not believe that any
further attitudinal research is necessary at this time.
Changes: None.
Comment: One commenter recommended that the research team include
people with an established credibility with the corporate community.
Discussion: The Secretary believes that the grantee's ability to
gain the confidence and cooperation of private sector entities with
responsibilities under Title I of the ADA is essential to the success
of the project. The composition of the research team and the
qualifications of key personnel are evaluated in the peer review
process using the applicable selection criteria. The Secretary does not
believe any further personnel requirements are necessary.
Changes: None.
Comment: One commenter recommended that NIDRR suggest
collaborations that would enhance the effectiveness of the
interventions that the project will develop to address challenging
employment practices.
Discussion: The Secretary believes that applicants should have
complete discretion to select the participants in any collaborative
effort that is proposed. The Secretary does not believe that NIDRR
should influence this decision by making suggestions.
Changes: None.
Rehabilitation Research and Training Centers (RRTCs)
Priority 1: Personal Assistance Services
Comment: One commenter applauded the reference to studying PAS in
the community (outside the home), but noted that the definition of PAS
used in the priority referred to home-based services.
Discussion: NIDRR used the definition of PAS that is included in
the Rehabilitation Act. The definition specifically refers to services
provided on the job. The commenter focused on the initial descriptive
phrase ``forms of home-based assistance,'' which was intended to imply
only that the services are provided outside of an institution. The
definition of PAS in the priority encompasses community-based services,
and this descriptive phrase in the background statement does not affect
the required scope of work.
Changes: None.
Comment: Two commenters noted that the priority appeared to either
be stating a preference for the ``independent living'' model of PAS, or
to be suggesting a comparative evaluation of that model and the
``medical model.'' The commenters believed that there was too much
emphasis on the differences between the two models.
Discussion: The discussion of the two models of PAS was intended
only to illustrate some of the ways in which PAS is organized and
delivered in the community. The Secretary realizes that these are two
points on a continuum, and that in fact most programs contain elements
of each of the ``pure'' models. The important issue is to determine
what components of a PAS delivery system are most appropriate for
individuals with disabilities of varying ages, types of disabilities,
cultural backgrounds, lifestyles, and life goals. The Secretary points
out that all of the references to models of PAS are included in the
background section and do not have direct relevance to the activities
to be performed by the Center.
Changes: None.
Comment: One commenter recommended that the compilation of a
database on extant PAS programs should be considered a service, rather
than a research activity, and should not compete for the limited
resources available for this Center.
[[Page 8131]]
Discussion: NIDRR has identified the need for such a database for
research purposes, not as a referral service. The types of data to be
collected could be regularly updated to track trends in availability,
funding sources, eligibility requirements, demand and usage, and costs
and resources. Such a database is seen as a key to determining who has
access to PAS, and whether the PAS that can be accessed varies
according to characteristics of the individual consumer.
Changes: None.
Comment: One commenter stated that there should be more emphasis on
training and services or technical assistance in the priority.
Discussion: The Secretary believes that there are many research
issues that must be addressed in the area of PAS and that there is a
tendency to respond to the demands for training and technical
assistance before the research base is secure. For that reason, the
priority focuses on research. Applicants are free to propose training
and technical assistance that they believe complements the research
scope, but the Secretary will not impose additional requirements.
Changes: None.
Comment: The priority currently calls for one conference for
consumers and one conference for policymakers to share findings and
obtain input on outstanding issues in the final year of the project.
One commenter stated that the priority should include a requirement for
three conferences to assist in the design of the Center, evaluate
progress at the mid-point, and extend the availability of effective
PAS.
Discussion: The Secretary requires conferences targeted to these
two audiences as a dissemination mechanism. The commenter's suggestions
would amount to dictating the process that the grantee would use in
designing and evaluating its activities, and the Secretary declines to
limit grantees in proposing their own approaches to planning and
managing the project.
Changes: None.
Comment: Two commenters noted that there were many required
activities in the priority and suggested that various of these specific
activities could be deleted, while one suggested adding a requirement
to examine the ways in which technology can be used to replace or
supplement personal assistance, particularly in the workplace.
Discussion: The Secretary points out that the Center focuses on
four objectives: analyzing the availability of PAS; analyzing State
policies and practices; evaluating the impact of various types of PAS;
and developing strategies to increase the supply of qualified PAS. In
addressing these objectives, the Center is required to conduct six
activities. The Secretary believes that all the required activities are
important in addressing the objectives of the Center, and declines to
eliminate any of the basic requirements in the priority. The
requirement to investigate the use of PAS at the workplace reflects the
importance of identifying effective approaches that have the potential
to expand employment opportunities and enhance employment outcomes for
individuals with significant disabilities. In fulfilling this
requirement, the applicant may address the use of technology to promote
independent functioning at the workplace. The Secretary emphasizes that
applicants are free to determine their approach to each of the
objectives of the RRTC within the constraints of available resources.
Changes: None.
Priority 2: Vocational Rehabilitation Services for Persons With Long-
Term Mental Illness
Comment: Two commenters recommended studying the impact of
behavioral managed care on the delivery of vocational rehabilitation
services for persons with LTMI.
Discussion: Based on the first purpose of the priority, the
Secretary believes that an application could propose to study the
impact of behavioral managed care on the delivery of vocational
rehabilitation services for persons with LTMI. However, the Secretary
prefers to provide applicants with the discretion to propose specific
topics for investigation.
Changes: None.
Comment: One commenter recommended studying the cost-effectiveness
of vocational rehabilitation for persons with LTMI, and a second
commenter recommended studying the costs and benefits of providing
vocational rehabilitation to persons with LTMI.
Discussion: The Secretary believes that an applicant could propose
to conduct either study if the study furthered the purpose of the RRTC
to conduct research on the achievement of high quality employment
outcomes for persons with LTMI. However, the Secretary prefers to
provide applicants with the discretion to propose specific topics for
investigation.
Changes: None.
Comment: One commenter recommended including individuals with head
injury in the definition of individuals with LTMI.
Discussion: The Secretary believes that individuals who have
experienced a head injury and exhibit behaviors of individuals with a
long-term mental illness could be included within the target population
of this RRTC. The Secretary points out that for Fiscal Year 1996, NIDRR
is funding ten projects related to brain injury, including two RRTCs.
The Secretary does not believe that NIDRR should support any additional
research on head injury at this time.
Changes: None.
Comment: One commenter recommended addressing the needs of persons
with dual diagnosis, youth, women, and persons from minority
backgrounds.
Discussion: The Secretary points out that all applicants must meet
the statutory requirement to demonstrate how the application will
address the needs of individuals with disabilities from minority
backgrounds. In regard to persons with dual diagnosis, youth, and
women, the Secretary believes that an applicant could propose to
address the needs of these individuals. However, the Secretary prefers
to provide applicants with the discretion to propose specific target
populations for investigation.
Changes: None.
Comment: The same commenter recommended requiring training and
dissemination activities to provide consumers and families members with
useful information to assist them in personal and systems advocacy. In
addition, the commenter recommended assuring that any research and
training activities be undertaken within an evaluative context.
Discussion: The Secretary agrees that the RRTC should provide
consumers and family members with useful information, and expects the
RRTC's evaluation plan to address all research and training activities.
Dissemination activities and the evaluation plan are evaluated in the
peer review process using the applicable selection criteria. The
Secretary does not believe any further personnel requirements are
necessary.
Changes: None.
Comment: One commenter suggested identifying high demand
occupational opportunities that may match the work skills and workplace
requirements of persons with LTMI. The commenter also suggested
identifying individualized strategies that lead to economic self-
sufficiency.
Discussion: The Secretary believes that within the activity to
analyze the relationships between employment experiences and the
characteristics of
[[Page 8132]]
impairment, an applicant could propose to identify occupational
opportunities that may match the work skills and workplace requirements
of workers with LTMI, and identify individualized strategies that lead
to economic self-sufficiency. However, the Secretary prefers to provide
applicants with the discretion to propose specific topics for
investigation.
Changes: None.
Comment: The same commenter suggested applying short-term outcome
measures, such as occupational growth, improved workplace behavioral
and coping strategies, and effective use of helping behavior in the
workplace, to determine whether high quality employment outcomes are
being achieved. The commenter also recommended considering economic
self-sufficiency as a long-term outcome.
Discussion: The Secretary believes applicants should have the
discretion to propose the types of employment outcomes and outcome
measures that will be used in the RRTC's research activities. The
proposed outcomes and outcome measures will be evaluated in the peer
review process using the applicable selection criteria. The Secretary
does not believe any further requirements are necessary.
Changes: None.
Comment: The same commenter recommended identifying necessary
supports and successful methods to secure and sustain family and
therapeutic supports for the attainment of employment outcomes.
Discussion: The Secretary believes that within the activity to
identify models of long-term vocational and community support for
persons who have achieved an employment outcome after the receipt of VR
services, an applicant could propose to identify necessary supports and
successful methods to secure and sustain family and therapeutic
supports. However, the Secretary prefers to provide applicants with the
discretion to propose specific topics for investigation.
Changes: None.
General
Comment: One commenter recommended that the Centers publish their
research findings in refereed journals.
Discussion: The quality of an applicant's proposed dissemination
activities are evaluated in the peer review process using applicable
selection criteria. The Secretary does not believe any further
dissemination requirements are necessary.
Changes: None.
Comment: One commenter recommended that the Secretary establish an
RRTC focusing on individuals with a combination of significant physical
and speech disabilities with an emphasis on those who use alternative
and augmentative communication devices.
Discussion: The Secretary believes that individuals with a
combination of physical and speech disabilities face significant
barriers. The Secretary points out that NIDRR is currently supporting a
Rehabilitation Engineering Research Center in Augmentative
Communication. In response to the commenter's suggestion, NIDRR will
consider conducting a planning meeting to explore research needs in
this area and issuing an invitational priority in the FY 1998 Field-
Initiated Research competition to address the needs of individuals with
a combination of significant physical and speech disabilities.
Changes: None.
Research and Demonstration Projects
Authority for the R&D program of NIDRR is contained in section
204(a) of the Rehabilitation Act of 1973, as amended (29 U.S.C. 760-
762). Under this program the Secretary makes awards to public agencies
and private agencies and organizations, including institutions of
higher education, Indian tribes, and tribal organizations. This program
is designed to assist in the development of solutions to the problems
encountered by individuals with disabilities in their daily activities,
especially problems related to employment (see 34 CFR 351.1). Under the
regulations for this program (see 34 CFR 351.32), the Secretary may
establish research priorities by reserving funds to support the
research activities listed in 34 CFR 351.10.
Priority
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 program only applications that meet this
absolute priority:
Priority: Improving Employment Practices Covered by Title I of the
Americans With Disabilities Act
Background
The intent of Title I of the Americans with Disabilities Act (ADA)
is to include and empower people with disabilities in the work force
(P. Blanck, The Americans with Disabilities Act: Putting the Employment
Provisions to Work, Annenberg Washington Program, page 9, 1993). Title
I provides that employers, employment agencies, labor organizations, or
joint labor-management committees may not discriminate against a
qualified individual with a disability in regard to job application
procedures, the hiring, advancement, or discharge of employees,
employee compensation, job training and other terms, conditions, and
privileges of employment. Discrimination under Title I includes not
making reasonable accommodations to the known physical or mental
limitations of an otherwise qualified individual with a disability who
is an applicant or employee, unless such covered entity can demonstrate
that the accommodation would impose an undue hardship on the operation
of the business.
The employment status of persons with disabilities is a matter of
critical importance, both in terms of public expenditures and in the
right of persons with disabilities to participate fully in the labor
market (J. McNeil, Americans with Disabilities: 1991-1992, Household
Economic Studies, pp. 70-33, December, 1993). One of the assumptions
underlying the ADA is that discriminatory employment practices are
contributing significantly to the depressed employment status of
persons with disabilities. For 1994, of the 29.41 million persons 21 to
64 years old who had a disability, 14.03 million or 47.7 percent were
unemployed. For the same year, the mean monthly earnings of workers
with disabilities was $1,713 compared to $2,160 for workers without
disabilities (J. McNeil, U.S. Bureau of the Census, Survey of Income
and Program Participation, 1994).
The Equal Employment Opportunity Commission (EEOC), which has
enforcement responsibility for Title I of the ADA, estimates that Title
I covers approximately 666,000 businesses employing approximately 86
million workers (EEOC Press Release, July 19, 1994). Title I became
effective for employers with 25 or more employees on July 26, 1992, and
on July 26, 1994 for employers with 15 or more employees. Partially as
a result of the recency of these effective dates, little is known about
the actual impact of Title I on the employment practices of covered
entities. The research that has been conducted on the impact of Title I
on employment practices relies primarily on attitudinal surveys of
employers toward the ADA, and the anticipated impact that Title I might
have on their employment practices (see Baseline Study to Determine
Business' Attitudes, Awareness, and Reaction to the Americans with
Disabilities Act, Gallup Survey Report, 1992).
[[Page 8133]]
While little is known about the actual impact of Title I on
employment practices, data collected by the EEOC provide information
about alleged Title I ADA violations involving employment practices.
Since July 26, 1992 the EEOC has maintained a database regarding the
number of ADA violations that have been cited in charges and the
impairments cited in those charges. For the cumulative reporting period
between July 26, 1992 and June 30, 1996, the EEOC reports that a total
of 68,203 ADA charges were filed. Of the 68,203 charges, 52,448 or 76.9
percent have been resolved. The majority of resolutions are either
``Administrative Closures'' (40.2 percent) or ``No Reasonable Cause''
(45.2 percent). While it is impossible to determine what percentage of
the ``Administrative Closures'' involve charges that are meritorious,
the remaining 14.6 percent of the charges resulted in ``Merit
Resolutions'' (settlements--4.9 percent, withdrawals with benefits--7.2
percent, reasonable cause 2.5 percent) (EEOC Office of Program
Operations from EEOC's Charge Data National Data Base).
The complaints filed with the EEOC that result in ``Merit
Resolutions'' may be indications of not only discriminatory employment
practices, but also the difficulties that employers are having
understanding or implementing Title I's requirements. In a 1992 survey
of 618 employers in Georgia, 84 percent of the companies indicated that
they would like to receive more information concerning ADA
requirements, 65 percent wanted more information about financial
incentives, and 62 percent wanted disability awareness training for
employees and having access to trained, motivated employees with
disabilities (J. Newman and R. Dinwoodie, Impact of the Americans with
Disabilities Act on Private Sector Employers, Journal of Rehabilitation
Administration, Vol. 20, No. 1, February, 1996).
Persons with disabilities may be exposed to substantial emotional
and financial hardship as a result of discrimination or an employer's
lack of understanding of the employment practice requirements of the
ADA. Attempting to resolve Title I disputes through the complaint
process or litigation, can be costly and time-consuming for persons
with disabilities, employers, and the EEOC. Preventing employment
discrimination and disputes through the provision of information and
technical assistance enables employers and persons with disabilities to
share in the benefits of productive and financially rewarding
employment.
Priority
The Secretary will establish a research and demonstration project
on improving employment practices covered by Title I of the ADA that
will:
(1) Investigate the impact of the ADA on the employment practices
of private sector small, medium, and large businesses;
(2) Identify the ADA employment practice requirements (with a
special emphasis on hiring) that have been most challenging for
employers to implement successfully;
(3) Identify interventions that can be used by private sector
employers and persons with disabilities to address the challenging
employment practice requirements identified in (2) above;
(4) Demonstrate the effectiveness of the interventions involving
small, medium-sized, and large businesses; and
(5) Widely disseminate information on effective interventions to
employers and persons with disabilities.
In carrying out the purposes of the priority, the R&D project
shall:
* Consult with the EEOC in order to determine how EEOC
public-use data demonstrate the findings of compliance problems in
covered areas, especially in hiring, and how those and future data may
be available for the purposes of the project;
* Complement the General Accounting Office qualitative
evaluation of the employment provisions of the ADA; and
* Use a variety of information dissemination strategies to
reach as wide an audience as possible, including using the ten regional
Disability and Business Technical Assistance Centers.
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 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
[[Page 8134]]
extent to which applicants justify their choice of research projects in
terms of the relevance to the priority and to the needs of individuals
with disabilities. The Secretary also reviews the extent to which
applicants present a scientific methodology that includes reasonable
hypotheses, methods of data collection and analysis, and a means to
evaluate the extent to which project objectives have been achieved.
The Department is particularly interested in ensuring that the
expenditure of public funds is justified by the execution of intended
activities and the advancement of knowledge and, thus, has built this
accountability into the selection criteria. Not later than three years
after the establishment of any RRTC, NIDRR will conduct one or more
reviews of the activities and achievements of the Center. In accordance
with the provisions of 34 CFR 75.253(a), continued funding depends at
all times on satisfactory performance and accomplishment.
General
The following requirements apply to these RRTCs pursuant to the
priorities 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 one of the following priorities.
The Secretary will fund under these competitions only applications that
meet one of these absolute priorities:
Priority 1: Personal Assistance Services
Background
Over the past 20 years, various forms of home-based assistance have
emerged as alternatives to institutional or congregate care for
individuals who are unable to perform activities of daily living (ADLs,
such as eating, speaking, toileting), or instrumental activities of
daily living (IADLs, such as housekeeping, shopping, or food
preparation). This assistance often comes in the form of chore services
or home health aides provided for older persons through community
agencies or corporations and financed through public or private health
insurance. However, individuals with disabilities, particularly through
the independent living movement, have developed and promoted an
alternative model of personal assistance featuring consumer direction.
In this priority, personal assistance services (PAS) is used to refer
to the full range of service delivery models for providing home-based
support services, including chore services, home health care, and
consumer-directed personal assistants (PAs).
Programs to fund and provide personal assistance services for
individuals with severe disabilities have developed in response to the
increased numbers of persons with disabilities living independently in
their homes (Kennedy, J., Policy and Program Issues in Providing
Personal Assistance Services, Journal of Rehabilitation, July/August/
September, 1993). The term ``personal assistance services'' was added
to the Rehabilitation Act of 1973, with the 1992 amendments, and
defined as ``a range of services, provided by one or more persons,
designed to assist an individual with a disability to perform daily
living activities on or off the job that the individual would typically
perform if the individual did not have a disability'' (section 7(11)).
The provision of on-the-job or related PAS is specifically authorized
under the Vocational Rehabilitation Services Program while an
individual is receiving services under the program (section
103(a)(15)). In addition, PAS is considered to be an element in the
definition of ``independent living services'' in section 7(30)(B)(vi)
of the Act.
PAS is also supported by health care agencies, public welfare
agencies, educational institutions, private insurance providers,
nonprofit organizations, client self-funding, and a host of less common
sources. Indeed, researchers have identified more than 300 State level
PAS programs, and suggest that they may be categorized by: (1) target
population, such as persons who are aged, persons with developmental
disabilities, persons with mental illness; (2) type of service, such as
chore services and medical services; and (3) method of funding, such as
public Medicaid assistance or private individual or insurer purchase of
care from home health care providers (Medlantic Research Foundation,
The Feasibility of Establishing a Regional Personal Assistance Program
in the Metropolitan Washington D.C. Area, 1991).
Information from the 1990 Survey of Income and Program
Participation (SIPP) and the 1990 Decennial Census indicates that about
4.1 million nonelderly adults, and 5.8 million elderly persons living
in community settings have acute or chronic health conditions that may
make them candidates for individual personal assistance in their homes
(Adler, Population Estimates of Disability and Long-Term Care, ASPE
Research Notes, l995). The population potentially in need of PAS is
very diverse in terms of geographic location, disability or medical
condition, personal health care needs, and psychosocial
characteristics.
Two major contrasting models of personal assistance may be
identified as the independent living (IL) model, and the medical model.
The range of personal services programs may be arrayed on a continuum
between the two pure archetypes, with many variations falling at
various points on the continuum. The original, or medical model, is
characterized by professionalism; agency control and supervision of
service providers; and strictly specified tasks that generally must be
provided in the home. An agency hires, trains (usually under a medical,
nursing, or health services approach), pays, assigns, supervises, and
terminates the workers, commonly referred to as health aides, and the
user has a limited role in planning, directing, and assessing this
delimited range of services. In the IL model, individuals with
disabilities have a substantial role in determining the terms and
conditions of PAS, and they hire, train, and supervise their PAs (A
Comparison of Some of the Characteristics of Two Models of Personal
Assistance Services, World Institute on Disability, 1995). Although
research has shown that PAS are effective, cost efficient, and popular
with those assisted under the IL model, the medical model predominates
throughout the United States (Kennedy, 1991; Kennedy and Litvak, S.
Case Studies of Six State Personal Assistance Service Programs funded
by the
[[Page 8135]]
Medicaid Personal Care Option, 1991). The reasons for the prevalence of
the medical model are not entirely clear, but there are several
possible explanations. The medical model emerged earlier, in response
to the needs of elderly persons, who were then being cared for in a
medical or quasi-medical environment. It was a logical extension to
duplicate the medical model in home-based services, including elements
of medical prescriptiveness, health services training and
qualifications, and focus on such things as security and
accountability. It is also possible that older clients are less
comfortable with learning new roles in determining their own needs and
supervising their care, and that some may lack the physical or
cognitive capacities to assume these roles. On the other hand, it may
be that younger disabled individuals place much higher value on
autonomy, social integration, self-determination and independence than
do many of the frail elderly.
Although researchers have described these two models of PAS, there
is insufficient information on the characteristics of the PAS that is
available to various subgroups of individuals with disabilities,
including not only information on the service delivery models, but also
factors such as eligibility criteria, quantity and nature of services
provided, sources of financing, and costs (per client, per unit of
services, and total). Researchers, service providers, policymakers, and
advocates would benefit from greater knowledge about the kinds of PAS
services available to disabled individuals with various
characteristics, including age, type of disability, geographic
location, work history, and residential and family status. A
comprehensive database of available PAS, on a State-by-State basis, is
fundamental to conducting the analyses that will accomplish the
purposes of this priority.
Beyond improving understanding of what exists, it is important to
both assess the contributions of these services to individuals with
disabilities and to society, and to anticipate new developments in
service provision and planning. The objectives of the IL model of PAS
are somewhat different from those of the medical model. To some extent,
these are the individual goals and objectives of the disabled persons
who use PAS. However, there are some overall objectives or expectations
that society has in their establishment and funding of these programs.
It is important to define both sets of objectives and develop standards
and measures that will permit an assessment of the effectiveness of PAS
in achieving societal objectives as well as in satisfying the
expectations of the users of PAS. The objectives of these two groups
are expected to be similar, although not necessarily identical and not
prioritized in the same order. Societal objectives may include the
avoidance of costly future interventions through health maintenance,
prevention of further disablement, safety, and return to work, and
these may be reasonably objective and quantifiable outcomes. Consumer
objectives may focus on more subjective measures such as autonomy,
social integration, and quality of life. Consumers and policymakers
will be best served by a comprehensive assessment of PAS outcomes. This
priority focuses on the access to, use and outcomes of, and
satisfaction with, various configurations of PAS by individuals of
working age.
Increasingly, individuals using PAS, and often the PAs as well, are
entering the worksite as a result of innovations in telecommuting,
flexiplace, home businesses, and individual accommodations for workers
in traditional work sites. There is need for studies that will examine
alternative approaches to providing PAS to individuals with
disabilities in employment settings, including on-site versus off-site
assistance, configurations of services necessary to support employment,
and that examine relations between PAs and job coaches, rehabilitation
counselors, interpreters, and other service personnel. The relationship
between the types of services available through PAS and the likelihood
of maintaining employment is an area for investigation.
The introduction of managed care approaches to health care delivery
and financing and the influence of Federal court decisions are likely
to result in extensive changes to State-administered Medicaid programs
providing PAS. In addition, the Robert Wood Johnson Foundation is
providing $3 million in grants to stimulate States, nonprofit
organizations, and communities to demonstrate the effectiveness of the
choice concept in PAS. There is also an anticipated decentralization of
responsibility for service delivery and devolution of regulatory
control over funds and services to the States or local government
levels. It is unclear what effect these new patterns will have on
availability, eligibility, and service configurations. There is a need
to analyze the impact of these anticipated new public program and
policy directions on the administration of PAS, and to improve public
information, increase interagency collaboration on effective program
features, and develop strategies to address shortages of trained
personnel for providing PAS.
Priority 1: The Secretary will establish an RRTC that will
contribute to the understanding of personal assistance services that
informs policymaking and practice throughout the nation by:
(1) Analyzing the patterns of access to PAS in terms of the
characteristics of the consumers with disabilities, the components of
the PAS programs, and the administrative requirements;
(2) Assessing the impact of devolution/decentralization on PAS
through the analysis of trends in the availability of PAS and the
correlation of these trends with new developments in State policies;
(3) Evaluating the impact of various types and amounts of PAS on
desired consumer outcomes, including health maintenance and secondary
prevention, appropriate versus inappropriate health care utilization,
productivity and employment, community participation, emotional well-
being, and life satisfaction; and
(4) Developing strategies to increase the availability of effective
PAS and qualified PAs.
In addition to activities proposed by the applicant to carry out
these objectives, the RRTC must conduct the following activities:
* Develop and maintain a comprehensive database on types of
PAS available on a State-by-State basis, including relevant descriptors
of the PAS and the clients served;
* Investigate existing practices of integrating PAS into the
workplace, and disseminate models of effective practices;
* Assess the availability of qualified PAs and develop
strategies to increase the pool, skill levels, work performance, job
satisfaction, and sustained involvement of qualified PAs in the field;
* Identify new models at the State level, including service
configurations, financing methods, or delivery practices that have the
potential to make more effective PAS available to individuals with
disabilities who need PAS;
* Conduct at least one conference for consumers and one
conference for policy makers in the final year of operations to share
findings with these target audiences and to obtain feedback on
outstanding issues; and
* Coordinate with ongoing research activities in the Robert
Wood Johnson Independence initiative and the Department of Health and
Human Services Cash and Counseling demonstration, as well as with other
[[Page 8136]]
relevant NIDRR research centers and projects.
Priority 2: Vocational Rehabilitation Services for Persons With Long-
term Mental Illness
Background
The National Institute of Mental Health estimates that there are
over 3 million adults ages 18-69 who have a serious mental illness
(Manderscheid, R.W. & Sonnenschein, M.A. (Eds.), Mental Health, United
States 1992 U.S. Department of Health and Human Services, Rockville,
MD; DHHS Publication No.(SMA) 92-1942). Estimates of unemployment among
this group remains in the 80-90 percent range (Baron, R., NIDRR Public
Hearing on Disability Research, November 28, 1995).
The Social Security Administration (SSA) operates the nation's two
largest Federal programs providing cash benefits to people with
disabilities--the Supplemental Security Income (SSI) and the Social
Security Disability Insurance (SSDI) programs. The number of SSI/SSDI
beneficiaries with severe mental illness, and the nation's expenditures
for them, have continued to grow over the last ten years and SSA
expects the number will continue to grow (SSA, Developing a World-Class
Employment Strategy for People with Disabilities, September, 1994). A
recent study by the U.S. General Accounting Office (GAO) found that by
1994, mental impairments, which are associated with the longest
entitlement periods, accounted for 57 percent of the SSI beneficiary
population aged 18 to 64 and 31 percent of the SSDI beneficiary
population (GAO Report, SSA DISABILITY, Program Redesign Necessary to
Encourage Return to Work, April, 1996).
There are significant complexities in designing effective return-
to-work strategies to assist individuals in the SSA caseload. Assisting
those individuals who can return to work will require varying
approaches and levels of support. Individuals who have completed the
process of establishing themselves as disabled for SSA purposes may
find it difficult to later view themselves as having remaining work
potential. The transfer payments and other benefits contingent on SSI/
SSDI eligibility (especially medical insurance benefits) may increase
the opportunity costs involved in return to work beyond the level
acceptable to the individual. The benefit structure may provide a
particular barrier for low-wage workers, those who are unskilled, or
had marginal attachments to the labor market in the past. Beneficiaries
face the loss of Medicare or Medicaid benefits if they return to work
and marginal jobs may not offer adequate, or any, medical coverage,
especially for pre-existing conditions. Relinquishing these benefits is
particularly risky for individuals with LTMI, since recurring episodes
of their illness may result in repeated job loss and the need for quick
access to benefits.
SSA has implemented several work incentive programs to help people
with disabilities enter or re-enter the workforce by protecting their
cash and medical benefits until they can support themselves (Red Book
on Work Incentives--A Summary Guide to Social Security and Supplemental
Security Income Work Incentives for People with Disabilities, SSA Pub.
No. 64-030, U.S. Government Printing Office, June, 1992). For
individuals with a LTMI, the Social Security Work Incentives (SSWI)
have the potential to be a valuable component of the overall
rehabilitation process. However, there has been neither a comprehensive
assessment of the effectiveness of the SSWI programs nor an
identification of the possible improvements to the program. There is
some evidence, especially anecdotal evidence, that rather than using
SSA work incentives, individuals may decide to work for earnings at a
level that does not threaten continued eligibility for benefits
(Rehabilitation Services Administration (RSA), Program Administrative
Review--The Provision of Vocational Rehabilitation Services to
Individuals Who Have Severe Mental Illness, 1995).
The State Vocational Rehabilitation (VR) Program provides services
to nearly 1,000,000 individuals with disabilities each year. In fiscal
year 1992, individuals with the primary disabling condition of a mental
illness made up about 19 percent of those who received services from
the State VR Program, the second largest disability group. However, RSA
has reported that the success rate for this population generally falls
below the average success rate for the VR program. In 1993, RSA
conducted a Program Administrative Review (PAR) in order to improve the
provision of vocational rehabilitation services to individuals who have
severe mental illness. Specifically the study examined the use of
identified best practices including their use and relationship to
successful outcomes and made recommendations for actions to be taken by
VR State agencies to improve employment outcomes. In their review of a
sample of case records of individuals with severe mental illness,
documentation of the use of SSWIs was found in a relatively small
percentage of the records of those individuals eligible for such
incentives. RSA also found that individuals who achieved employment
outcomes were more likely to have used work incentives.
There are numerous other barriers facing individuals with severe
mental illness seeking vocational rehabilitation including the often
chronic and episodic nature of the illness, the iatrogenic effects of
pharmacological and psychological treatment interventions, difficulties
in assessing clients' work readiness, and stigma toward persons with
mental illness. There is still much to be learned about the interaction
of diagnosis, symptoms, skills and job environment. Because the
severity of symptoms does not necessarily correspond with an
individual's functional limitations, it is important to develop a
better understanding of how psychiatric symptoms and diagnosis affect
vocational outcomes (Cook, J.A. & Picket, S.A., Recent Trends in
Vocational Rehabilitation for Persons with Psychiatric Disabilities,
American Rehabilitation, 20(4), pages 2-12, 1995).
There have been a variety of types or models of vocational
rehabilitation programs and techniques that have been developed to
increase the employment of individuals with mental illness, including
models which have demonstrated effectiveness in returning persons with
LTMI to competitive employment. What we do not know is which types of
vocational rehabilitation model are most beneficial for which types of
consumers and at which stages of their recovery process (McGurrin,
M.C., An Overview of the Effectiveness of Traditional Vocational
Rehabilitation Services in the Treatment of Long Term Mental Illness,
Psychosocial Rehabilitation Journal, 17(3), pp. 37-54, 1994).
In addition, there is a need for more information on duration and
quality of employment, including issues of disclosure and consumer
choice. Individuals with mental illness bring to the work place a range
of unique needs. Because the episodic nature of the disability may
cause intermittent instability, ongoing support is often needed for
both the employee with mental illness and the employer in order to
maintain employment. One study of outcomes among this population found
that the occurrence of uninterrupted vocational support was a major
predictor of employment status, even controlling for prior work
history, client demographics, and level of functioning (Cook, J.A. et
al., Cultivation and Maintenance of
[[Page 8137]]
Relationships with Employers of People with Psychiatric Disabilities,
Psychosocial Rehabilitation Journal, 17(3), pp. 103-115, 1994).
RSA in its examination of the use of best practices in VR State
agencies found that the use of ongoing vocational support services and
community-based support services were not frequently planned for at the
time individuals' service plans were being developed nor routinely
planned for at the time individuals were leaving the VR program.
However, individuals who achieved employment outcomes were more likely
to have had post-employment needs assessed during the development of
their individualized rehabilitation program
There is a need for studies that examine long-term employment
issues including the experiences of employers and employees with LTMI
in long term employment relationships and that assess the vocational
and community supports needed to maintain employment.
Priority 2: The Secretary will establish an RRTC for the purpose of
conducting a comprehensive program of research on the achievement of
high quality employment outcomes for persons with LTMI. The RRTC shall:
(1) Examine how public policies and benefit programs affect the
employment of individuals with LTMI;
(2) Identify the characteristics of consumers (including their
stage in the recovery process) that benefit from various types of
vocational rehabilitation models;
(3) Examine factors that promote long term job retention such as
workplace strategies that assist in the maintenance of employee--
employer relationships and the availability of long-term supports; and
(4) Develop and deliver training and technical assistance to
rehabilitation service providers and consumers of mental health
services on new and effective rehabilitation techniques and
accommodations and evaluate the efficacy of the training.
In addition to the activities proposed by the applicant to fulfill
these objectives, the RRTC shall:
* Identify effective strategies to broaden the understanding
and use of the SSA's Work Incentives Program for individuals with LTMI;
* Conduct studies on long-term relationships between
employers and persons with LTMI including in-depth assessment of
disclosure issues, career patterns, accommodations and conflict
resolution in the workplace;
* Analyze the relationships between employment experiences
and the characteristics of impairment (e.g., diagnosis, periodicity,
medication, symptoms), and between employment experiences and the
characteristics of the work environment; and
* Identify successful models of long-term vocational and
community support for persons who have attained employment after the
receipt of VR services.
In carrying out the purposes of the priority, the RRTC shall:
* Involve individuals with psychiatric disabilities in all
phases of the planning, implementation, evaluation and dissemination of
project activities; and
* Coordinate with the Social Security Administration and
with other relevant research and demonstration activities sponsored by
the Center for Mental Health Services, Rehabilitation Services
Administration and the NIDRR.
Applicable Program Regulations: 34 CFR Parts 350, 351, and 352.
Program Authority: 29 U.S.C. 760-762.
(Catalog of Federal Domestic Assistance Numbers: 84.133A, Research
and Demonstration Projects, 84.133B, Rehabilitation Research and
Training Center Program)
Dated: February 18, 1997.
Judith E. Heumann,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 97-4317 Filed 2-20-97; 8:45 am]
BILLING CODE 4000-01-P