[Federal Register: May 20, 2002 (Volume 67, Number 97)]
[Notices]
[Page 35691-35697]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
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Part IV
Department of Education
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National Institute on Disability and Rehabilitation Research; Notice
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DEPARTMENT OF EDUCATION
National Institute on Disability and Rehabilitation Research
AGENCY: Office of Special Education and Rehabilitative Services,
Department of Education.
ACTION: Notice of proposed priorities.
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SUMMARY: The Assistant Secretary for Special Education and
Rehabilitative Services proposes funding two priorities, one priority
on Aging-Related Changes in Impairment for Persons Living with Physical
Disabilities and a priority on Personal Assistance Services under the
Rehabilitation Research and Training Center (RRTC) Program for the
National Institute on Disability and Rehabilitation Research (NIDRR)
for fiscal years (FY) 2002-2004. The Assistant Secretary takes this
action to focus research attention on an identified national need. We
intend these priorities to improve the rehabilitation services and
outcomes for individuals with disabilities.
DATES: We must receive your comments on or before June 19, 2002.
ADDRESSES: Address all comments about these proposed priorities to
Donna Nangle, U.S. Department of Education, 400 Maryland Avenue, SW.,
room 3412, Switzer Building, Washington, DC 20202-2645. If you prefer
to send your comments through the Internet, use the following address:
donna.nangle@ed.gov.
You must include the term Aging-Related Changes in Impairment for
Persons Living with Physical Disabilities or Personal Assistance
Services in the subject line of your electronic message.
FOR FURTHER INFORMATION CONTACT: Donna Nangle. Telephone: (202) 205-
5880.
If you use a telecommunications device for the deaf (TDD), you may
call the TDD number at (202) 205-4475 or via the Internet:
donna.nangle@ed.gov.
Individuals with disabilities may obtain this document in an
alternative format (e.g., Braille, large print, audiotape, or computer
diskette) on request to the contact person listed under FOR FURTHER
INFORMATION CONTACT.
SUPPLEMENTARY INFORMATION:
Invitation to Comment
We invite you to submit comments regarding the proposed priorities.
We invite you to assist us in complying with the specific
requirements of Executive Order 12866 and its overall requirement of
reducing regulatory burden that might result from the proposed
priorities. Please let us know of any further opportunities we should
take to reduce potential costs or increase potential benefits while
preserving the effective and efficient administration of the program.
During and after the comment period, you may inspect all public
comments about the priorities in room 3412, Switzer Building, 330 C
Street, SW., Washington, DC, between the hours of 8:30 a.m. and 4:00
p.m., Eastern time, Monday through Friday of each week except Federal
holidays.
Assistance to Individuals With Disabilities in Reviewing the
Rulemaking Record
On request, we will supply an appropriate aid, such as a reader or
print magnifier, to an individual with a disability who needs
assistance to review the comments or other documents in the public
rulemaking record for the proposed priorities. If you want to schedule
an appointment for this type of aid, please contact the person listed
under FOR FURTHER INFORMATION CONTACT.
We will announce the final priorities in a notice in the Federal
Register. We will determine the final priorities after considering
responses to this notice and other information available to the
Department. This notice does not preclude us from proposing or funding
an additional priority, subject to meeting applicable rulemaking
requirements.
Note: This notice does not solicit applications. In any year in
which we choose to use these proposed priorities, we invite
applications through a notice published in the Federal Register.
When inviting applications we designate each priority as absolute,
competitive preference, or invitational.
The proposed priorities refer to President Bush's New Freedom
Initiative (NFI). The NFI can be accessed on the Internet at the
following site: http://www.whitehouse.gov/news/freedominitiative/
freedominitiative.html.
The proposed priorities also refer to NIDRR's Long-Range Plan (the
Plan). The Plan can be accessed on the Internet at the following site:
http://www.ed.gov/offices/OSERS/NIDRR/Products.
Description of the Rehabilitation Research and Training Centers
(RRTC) Program
The RRTCs conduct coordinated and integrated advanced programs of
research targeted toward the production of new knowledge, to improve
rehabilitation methodology and service delivery systems, alleviate or
stabilize disabling conditions, or promote maximum social and economic
independence for persons with disabilities. RRTCs operate in
collaboration with institutions of higher education or providers of
rehabilitation or other appropriate services. Additional information on
the RRTC program can be found at: http://www.ed.gov/offices/OSERS/
NIDRR/Programs/res_program.html#RRTC.
General Requirements
The RRTC must:
Carry out coordinated advanced programs of rehabilitation
research;
Provide training, including graduate, pre-service, and in-
service training, to help rehabilitation personnel more effectively
provide rehabilitation services to individuals with disabilities;
Provide technical assistance to individuals with
disabilities, their representatives, providers, and other interested
parties;
Disseminate informational materials to individuals with
disabilities, their representatives, providers, and other interested
parties;
Serve as centers for national excellence in rehabilitation
research for individuals with disabilities, their representatives,
providers, and other interested parties.
Priorities
Aging-Related Changes in Impairment for Persons Living With Physical
Disabilities
Background:
In recent years, advances in medical science, technology,
rehabilitation, public health, and consumer education have resulted in
increased life expectancies for individuals with physical disabilities.
Individuals with physical disabilities face challenges, not only with
the physical, mental and social manifestations of "normal" aging, but
also the cumulative effects of chronic, disability-specific functional
impairments. The impact of these new, physical, functional, and
psychosocial changes are often unanticipated and are variable,
depending on a myriad of factors including, but not limited to,
disability severity and age of onset, presence of secondary health
conditions, access to community-based supports, caregiver support and
burden, and access to routine health care. (Aging with Disability, RRTC
on Aging with a Disability, http://www.jik.com/awdrtcawd.html).
The 1997 Census data estimate that 33.0 million individuals, 12.3
percent of
[[Page 35693]]
the population had a severe disability. Individuals 15 years of age and
over were defined as having a severe disability if they: (1) Used a
wheelchair, cane, crutches, or walker; (2) had other mental or
emotional conditions that seriously interfered with everyday
activities; (3) received federal benefits based on their inability to
work; (4) had Alzheimer's disease, mental retardation, or a
developmental disability; or (5) were unable to perform (without
assistance) one or more activities of daily living, instrumental
activities of daily living, or functional activities such as seeing,
hearing, speaking, lifting, walking, or grasping small objects (U.S.
Census Bureau, Census 1996 Survey of Income and Program Participation:
Aug.-Nov. 1997, pg. 2).
For those 21 million individuals who reported having a disability
in a single domain, those 15 years of age and older confirmed having a
disability in the physical domain. This represents a substantially
higher proportion than those declaring disability in the communication
or mental domains (U.S. Census Bureau, Census 1996 Survey of Income and
Program Participation: Aug.-Nov. 1997, Table 2, pg. 13).
It is recognized that there are numerous widely accepted
definitions for physical disability used in the disability and
rehabilitation research literature. For the purposes of this priority,
Verbrugge's definition of the physical class of disability will be
used. As stated, "physical disability refers to difficulty in
performing basic actions required for daily living, such as mobility,
purposeful movement, balance, and strength," (Verbrugge L.,
Disability, Rheumatic Disease Clinics of North America, Nov. 1990;
16(4)). Physical disabilities are often referred to in the context of
being able to perform self-care activities or activities required for
community living (Ostir G.V., Disability in Older Adults 1: Prevalence,
Causes and Consequences, Behavioral Medicine, Winter 1999; 24(4): 147-
56, pg.2). Some examples of physical disabilities include, but are not
limited to: Spinal Cord Injury (SCI); Cerebral Palsy (CP); Post-Polio
Syndrome (PPS); Muscular Dystrophy (MD); and Multiple Sclerosis (MS).
Many individuals with these long-term conditions describe the onset of
increased pain, spasticity, joint stiffness and generalized fatigue,
decreased muscle strength, reduced stamina and endurance (Aging, Well-
Being and Cerebral Palsy, The Roeher Institute Final Report, submitted
October 1996, http://www.ofcp.on.ca/aging.html; Gueze R., et al.,
Clinical and research diagnostic criteria for developmental
coordination disorder: a review and discussion, Human Movement Science
2001 Mar; 20(1-2): 7-47; Siddall P.J. & Loeser J.D., Pain following
spinal cord injury, Spinal Cord, 2001; 39: 63-73). For example, studies
show that persons aging with SCI routinely report increased fatigue and
pain (Functional Change Fact Sheet 3, http://www.agingwithsci.org).
Individuals diagnosed with PPS encounter new, progressive muscle
weakness, increases in pain, diminished energy levels up to 15 years
after their original illness (Post Polio Syndrome: Identifying Best
Practices in Diagnosis and Care, http://www.modimes.org).
Classic studies on aging, such as, the Baltimore Longitudinal Study
of Aging have provided a plethora of baseline data from which
gerontologists and geriatric professionals have documented the
physiological, psychological, and social aspects of the normal aging
process. As a result of more recent studies conducted in the disability
and rehabilitation arena, findings are emerging that begin to support
and frame: (1) documentation and characterization of the atypical aging
patterns noted in many individuals with physical disabilities and (2)
systematic identification and development of strategies to measure and
assess aging related changes and increases in severity of impairment.
Measurement of changes in impairment associated with aging with a
disability is as complex and dynamic as the myriad of medical, socio-
demographic, and psychosocial factors that influence the aging process.
Gerontology, sociology and allied health literature suggest that,
across disability groups, examination of the variability and
interrelationship of five factors are critical to successfully
measuring and characterizing aging-related changes and the overarching
impact these changes may have on activity limitation and participation
across major life domains. These factors are: (1) The era in which the
individual is diagnosed (period of onset); (2) the chronological age at
which disability occurs (age of onset) (3) duration of disability; (4)
initial severity; and (5) the presence or onset of secondary
conditions.
Study across diagnostic groups has been especially difficult
because of the wide array of secondary conditions and confounding
complications resulting from routine aging and associated with the
primary condition causing disability. Public health experts agree that
secondary conditions constitute a significant and shared health risk
for individuals aging with physical disabilities. Individuals with
polio and rheumatoid arthritis report experiencing osteoarthritis,
diabetes, heart disease, high blood pressure, and asthma. (Campbell
M.L., et al., Secondary health conditions among middle-aged individuals
with chronic physical disabilities: implications for unmet needs for
services, Assistive Technology; 1999; 11(2): 105-122). Individuals with
SCI and other chronic physical disabilities also report health problems
such as hypertension, high cholesterol, cardiopulmonary disorders,
obesity, osteoporosis, bone fractures, and pressure ulcers, which are
all considered to be of especially high incidence in individuals with
chronic physical disability (Garland D.E., et al., Bone Loss with Aging
and the Impact of SCI, Topics in Spinal Cord Rehabilitation, 6: 3, 61-
69; Kraft G.H., Multiple Sclerosis: A Rehabilitative Approach, http://
depts.washington.edu/rehab/ms/narrative.shtml).
In general, inviduals aging with a physical disability are more
likely than their non-disabled peers to experience declines in health
status, increases in severity of impairment, reduction in level of
activity, and reduced participation in major life activities. These
aging-related changes can lead to decreased functional independence and
diminished quality of life for some individuals while others may
experience relative stability in function as they age with their
physical disability. (Ostir G.V., Disability in Older Adults 1:
Prevalence, Causes and Consequences, Behavioral Medicine, Winter 1999;
24(4): 147-56; Carlson J.E., Disability in Older Adults 2: Physical
Activity as Prevention, Behavioral Medicine, Winter 1999; 24 (4): 157-
68; Guttman C., Older Americans 2000: New data system that tracks
health and well-being finds successes and disparities, Geriatrics, Oct
2000; 55(10): 63-6,69).
Further, as compared to the non-disabled population, aging-related
changes have a greater impact on individuals with physical disabilities
who are already less likely to work, attend college, access and utilize
community-based services, and participate in recreation and leisure
time activities. These same individuals are often more likely to
experience clinical depression, encounter social isolation and
substance abuse problems (Maloni H.W., Pain in multiple sclerosis: an
overview of its nature and management, Journal of Neuroscience Nursing,
2000; June; 32(3): 139-44, 152; Kaplan G.A., et al., Natural history of
leisure-time physical activity and its correlates: associations with
mortality from all causes and cardiovascular disease over 28 years,
American Journal
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of Epidemiology, 1996; 144: 793-7; Mendes de Leon, et al., Self-
efficacy, physical decline, and change in functioning in community-
living elders: a prospective study, Journal of Gerontology and Social
Science, 1996; 51: 183-90). Through the implementation of the NFI and
the Plan, NIDRR seeks to address the issues of aging with a physical
disability, with particular attention on preventing or minimizing
changes in impairment or both that impact activity and participation in
major life domains.
Focusing on both individual and systemic factors that impact
function, activity and participation, the NFI emphasizes the importance
of access to assistive and universally-designed technologies, employer
and workplace supports, and promoting full access to community-based
care. The Plan, which emphasizes the need for consumer knowledge and
information, new techniques, and technologies and advancements in the
overall body of scientific knowledge, calls for research to improve
individual outcomes in employment, health and function, technology for
access and function, and independent living and community integration.
Clearly, the challenges and opportunities for research on the unique
and varied issues of aging across disability groups are reflected
throughout the elements of the NFI and the Plan.
Priority 1
The Assistant Secretary proposes to establish a Rehabilitation
Research and Training Center on Aging-Related Changes in Impairment for
Persons Living with Physical Disabilities. The purpose of this absolute
priority is to generate new knowledge regarding the characteristics,
prevalence, and distribution of these changes, their interrelationships
with lifestyle and environmental factors, and their consequences on
health, activity, and participation across the life span. The priority
seeks to improve rehabilitation outcomes by encouraging innovative
interventions aimed at preventing or minimizing the impact of aging-
related changes on the well-being and productivity of persons with
physical disabilities. The RRTC is required to conduct significant and
substantial cross-disability research and is encouraged to collaborate
with one or more institutions, for the purposes of ensuring inclusion
of multidisciplinary expertise across disability groups, and sufficient
sample size and methodological rigor to generate robust findings.
The RRTC must:
(1) Clarify definitions and critically review and analyze
strategies to measure aging-related changes in physical, psychological,
and sensory impairment within and across at least two physical
disabilities such as, but not limited to, SCI, CP, PPS, MD, and MS;
(2) Using the disabilities selected, document aging-related changes
and examine variations in terms of prevalence, magnitude of change,
timing of onset (age and duration of disability), onset severity and
socio-demographic distribution within, and between study groups;
(3) Develop a conceptual model, grounded in an appropriate
theoretical framework, of aging-related changes in impairment that: (a)
Predicts determinants of increases or stability in severity of
impairment such as age, disability, lifestyle, or environmental
factors; (b) quantifies the interrelationships between stability and
increases in impairment and the occurrence of secondary health
conditions; and (c) evaluates the consequences of changes in impairment
on activity and participation across major life domains;
(4) Using the model (see (3)) as a framework, identify or develop
and evaluate rehabilitation techniques or interventions, or both, to
mitigate the direct consequences of changes in impairment on health,
activity limitations, and participation in employment, family life,
independent living, community integration, and leisure and recreational
activities; and
(5) Develop, implement, and evaluate a comprehensive plan to train
policymakers, researchers, practitioners, service providers and
advocates in rehabilitation and disability-related fields, and
consumers and family members about aging-related changes in impairment,
and the consequences for health, participation and quality of life of
individuals with physical disabilities.
In carrying out the purposes of the priority, the RRTC shall:
Develop and implement during the first year of the grant,
and in consultation with the National Center on Dissemination of
Disability Research (NCDDR), a comprehensive plan that promotes broad
dissemination to both consumer and professional audiences;
Involve consumers and family members as appropriate in all
stages of research and related activities;
Address the unique needs of individuals aging with
physical disabilities who are members of groups that have traditionally
been underrepresented, and demonstrate use of culturally appropriate
methods of data collection, measurement and dissemination;
Collaborate on projects, as appropriate, with NIDRR-funded
RRTCs, RERCs, and Model Systems, and other public and private agencies
and institutions;
In the fourth year of the project, conduct a state-of-the-
science national conference to disseminate and discuss the results of
the research with researchers, policymakers, consumers, family members,
and other stakeholders; and
Demonstrate appropriate multidisciplinary linkages to
Geriatrics, Gerontology and Rehabilitation.
Personal Assistance Services
Background
Personal Assistance Services (PAS) "means 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. The services shall be designed to increase the individual's
control in life and ability to perform everyday activities on or off
the job." (34 CFR 385.4(b)). In practice, PAS may be provided to a
range of populations, with a variety of disabilities, through a number
of delivery models with varying types of services, and using a variety
of funding mechanisms. NIDRR's Long-Range Plan (the Plan) sets a goal
in which PAS is based upon a support model, with the consumer having
primary control.
In both the New Freedom Initiative (NFI) and in his Executive Order
(E.O.) 13207 on Community-Based Alternatives for Individuals with
Disabilities derived from the Supreme Court's Olmstead decision, the
President states a clear intent ``to help ensure that all Americans
have the opportunity to live close to their families and friends, to
live more independently, to engage in productive employment, and to
participate in community life'' (http://www.whitehouse.gov/news/
releases/2001/06/20010619.html).
The combination of policies, protections, and mandates underscores
the appropriateness of a continued strong research focus on factors
associated with PAS at home, in the community, and at the worksite. The
goal of these efforts is to maximize the range of options available to
individuals with disabilities to ensure their full integration into and
participation in society.
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PAS includes assistance with activities of daily living (ADLs),
such as eating, bathing, dressing, or toileting, or instrumental
activities of daily living (IADLs), such as preparing meals, managing
money, or shopping. ``Work-related PAS might include filing, retrieving
work materials that are out of reach, or providing travel assistance
for an employee with a mobility impairment; helping an employee with a
cognitive disability with planning or decision making; reading
handwritten mail to an employee with a visual impairment; or ensuring
that a sign language interpreter is present during staff meetings to
accommodate an employee with a hearing impairment'' (President's
Committee on Employment of People with Disabilities, Personal
Assistance Services in the Workplace, 2000, http://www.odc.state.or.us/
tadoc/ada69.htm).
In an analysis of data from the National Health Interview Survey on
Disability (NHIS-D), 1994-95, LaPlante, Harrington, and Kang found that
almost 13.2 million individuals in the U.S. needed or received an
average of 31.4 hours per week of help with ADLs or IADLs, for a total
of 22 billion hours of care annually. Most of that care was from unpaid
caregivers (LaPlante M., Harrington C., and Kang T., Estimating Paid
and Unpaid Hours of Personal Assistance Services in Activities of Daily
Living Provided to Adults Living at Home, Health Services Research,
2002, publication pending). In other work based upon the same data
source, the authors found that a substantial number of individuals
reported that they needed more help than they received, with lower
incomes being a key factor in whether or not the individual needed
additional PAS (Harrington C., LaPlante M. and Kang T., Estimating the
Amount and Cost of the Unmet Need for Personal Assistance Services at
Home, Disability Statistics Center, draft 2000). Also, data from the
NHIS-D indicate that more than 500,000 people would need help with the
work-related tasks mentioned earlier in order to work--of that number,
176,000 are working, with 44,000 not being accommodated (e-mail
communication to NIDDR Staff from Kay, S., Jan. 31, 2002).
Demographic, social, and environmental trends affect the prevalence
and distribution of various types of disabilities as well as the
demands of those disabilities on social policy and service systems. For
example, persons age 65 and older have a greater need for PAS than do
persons of working age, 21 to 64 (LaPlante, Harrington & Kang, 2000;
McNeil J., Americans with Disabilities: 1997, U.S. Census Bureau,
2001). The effect of such a trend can be seen in the unmet needs for
PAS and, for some, the need to rely upon a barely adequate patchwork of
services. The specific nature of disability, whether physical,
cognitive, or psychiatric, must also be evaluated in terms of
significance to the availability of PAS that is appropriate to the
individual. The Olmstead decision, NFI, and other policies and
initiatives create what may be a fertile opportunity for expansion of
PAS that reflects the independent living perspective.
Availability of, and payment for, worksite PAS requires models that
allow greater freedom for individuals with disabilities to remain in,
or re-enter, the workforce. Sometimes, "in the workplace, PAS is
provided as a reasonable accommodation to enable an employee to perform
the functions of a job. The employer's responsibility for providing
reasonable accommodations begins when the employee reaches the job site
and concludes when the work day ends" (President's Committee on
Employment of People with Disabilities, 2000). Given the generally
lower earnings of people with severe disabilities as compared to those
without disabilities (McNeil, 2001), a substantial barrier may remain
for individuals with lower earnings in particular. Workers with
disabilities who may lack access to public programs or adequate health
insurance may be unable to afford PAS at home and in the community.
A recent report of the National Blue Ribbon Panel on PAS notes that
"for many individuals with disabilities, absence of assistance with *
* * non-medical, day-to-day activities * * * can affect the
musculoskeletal, circulatory, respiratory, and skin systems * * * and
can result in greater levels of disability and even greater need for
health and support services" (Dautel and Frieden, Consumer Choice and
Control: Personal Attendant Services and Supports in America, http://
www.ilru.org/pas/BRPPAS.htm, 1999). Living in the community with severe
disability can require negotiation of a complex variety of programs and
services to find appropriate PAS. In addition, depending upon
geographic location, availability of family and other informal
supports, respite care, and of course financial assets, adequate PAS
may not be assured. As Harrington and LeBlanc report, the availability
of home- and community-based services under Medicaid varies widely
depending upon location (Harrington C. and LeBlanc A.J., Medicaid Home
and Community-Based Services, Disability Statistics Report, 16, 2001).
McNeil finds that people with severe disabilities are less likely than
those without disabilities to be a householder and are more likely to
live as an unrelated individual. Analysis of model policies to provide
formal and informal assistance must be sensitive to the range of
sociodemographic variables.
The availability of PAS is a complex issue involving many factors
that affect community living and participation in employment
activities. Individuals with disabilities and personal care assistants
alike have reported numerous PAS workforce gaps, which negatively
impact the provision of PAS services to individuals with disabilities.
Recruiting potential PAS workers is hampered because of low pay, poor
benefits, and lack of opportunities for professional training,
development, networking, and career advancement (Focus on the
Frontline: Perceptions of Workforce Issues Among Direct Support Workers
and Their Supervisors, National Center on Outcomes Resources, http://
www.qualitymall.org/products/FMPro?-DB=qmproducts&-Lay=products&-
format=product_1.html&-Error=error.html&-RecID=34051&hits=17&-Edit,
2001). PAS providers also report difficulties measuring success,
another factor that contributes to worker burnout (Cockerill R. and
Durham N., Attendant Care and Its Role in Independent Living, as
Developed in Transitional Living Centres, New England Journal of Human
Services, 1992). Retaining existing PAS providers is difficult for the
same reasons; as a result, morale is low and turnover rates are high.
Mending these gaps is necessary to ensure successful independent
and community living for individuals with disabilities. Bob Kafka of
American Disabled for Attendant Programs Today notes that "whatever
our solution it is clear that outreach for attendants will be essential
if choice and control are to have any real meaning" (Kafka, B.,
Empowering Service Delivery: Evolving Home Health for the 21st Century,
http://www.libertyresources.org/mc/ca-26.html, 1998). The importance of
training for PAS providers is clear, with some consumer groups noting
that training should encompass philosophical as well as technical
matters. Kafka writes, for example, that ``training should not focus so
much on medical needs of the individual but rather on independent
living principles, disability rights, body mechanics.* * *'' NIDRR-
funded grantees and others have addressed some of these issues in
conjunction with specific geographic or target populations and
determined that what is needed is
[[Page 35696]]
an effort that is geographically diverse, covers a range of individuals
with disabilities, and addresses issues raised by new policy
initiatives.
Although the quality of PAS is impacted by training issues,
policies, low wages, and other complexities, the extent of the PAS
worker's knowledge about the needs of consumers is a major concern. For
example, knowledge of assistive technology (AT) is critical to enabling
individuals with disabilities to live as independently as possible.
Therefore, workers can be trained about the range of AT resources
available to individuals with disabilities. Information can be provided
about how these devices work, how to obtain them, and how to assist
individuals with disabilities to use them independently, to the
greatest extent practicable. As one consumer report notes, it is
important to combine "the skills of listening and networking with the
knowledge of resources and technical assistance to address the needs of
people with disabilities in a timely manner" (People with Physical
Disabilities are Speaking Out About Quality and Services, National
Center on Outcomes Resources, 2001).
Another important aspect of PAS affecting the well-being and
productivity of persons with significant disabilities is the
relationship between formal assistance and informal, unpaid assistance
from family and friends. Although formal and informal care are in
principle largely complementary, estimates from the 1994 National Long-
Term Care Survey quoted by R. Stone indicate that the majority of
noninstitutionalized elders with disabilities (67 percent) rely solely
on unpaid help from family members (Stone R., Long-Term Care for the
Elderly with Disabilities; Current Policy, Emerging Trends and
Implications for the Twenty-First Century, http://www.milbank.org/
0008stone/index.html, 2000). Other studies have estimated that 60-80
percent of all personal assistance and long-term care services in the
United States, regardless of age, are provided by families (Morris R.,
Caro F., and Hansan J., Personal Assistance; The Future of Home Care,
The Johns Hopkins University Press, 1998).
Key questions are: (1) To what extent, and how, is informal help
from family and friends being used to supplement or replace the need
for paid personal assistance services to support the employment,
functional independence, and community integration of working-age and
older adults with disabilities; (2) how satisfied are consumers with
the combination of formal and informal services they receive; and (3)
how does the provision of informal services affect the amount of paid
personal assistance they utilize? In tandem with other issues
surrounding PAS, the balance between formal and informal services is
inextricably tied to funding sources, whether public or private.
Research suggests that the degree to which funding streams, especially
public programs such as Medicaid, pay for formal PAS in lieu of, or to
supplement, informal PAS has substantial cost implications (Harrington,
LaPlante, and Kang, 2000).
Priority 2
The Assistant Secretary proposes to establish a Rehabilitation
Research and Training Center on Personal Assistance Services. The
purpose of this absolute priority is to support methodologically
rigorous collaborative research to generate new knowledge that informs
service delivery providers and policymakers regarding the need for and
provision of PAS at the worksite, in the community, and in home-based
settings for individuals with physical, sensory, cognitive,
psychiatric, and multiple disabilities.
The activities are:
(1) Identify or develop, or both, evaluate, and disseminate best
practices for PAS at the worksite to facilitate employment of
individuals with disabilities who need such accommodations;
(2) Identify or develop, or both, evaluate, and disseminate best
practices for PAS in community- and home-based settings to facilitate
maximum integration and participation by working-age and older adults
with disabilities;
(3) Conduct research on the PAS workforce and workforce development
that reflects geographic diversity and addresses PAS workforce
recruitment, retention, compensation and benefits; professional
training, development, and networking, for PAS providers, including
communication between individual, group, public and private PAS
providers; and crossover issues between disability and aging providers;
(4) Identify and analyze existing model State and Federal PAS
policies and programs, and develop a database to inventory the results;
(5) Evaluate and determine the impact on, and relevance to, PAS at
the worksite and in the community of recent policy initiatives, such as
E.O. 13207 implementing the Olmstead decision, the NFI, and other
systems change activities for changes to existing State and Federal
policies and programs;
(6) Conduct research on the relationship between formal and
informal PAS and caregiving support, and on the role of assistive
technology (AT) in complementing personal assistance to enhance the
function, access, independent living, and quality of life of working-
age and older adults with disabilities. In addition, identify and
evaluate barriers to obtaining and using multiple sources of support;
and
(7) Identify, develop, and evaluate models to eliminate barriers
encountered by working-age and older adults with disabilities in
accessing and utilizing both formal and informal PAS and AT to support
employment, functional independence, and community integration.
In addition to proposed activities, in carrying out these
priorities, the applicant must:
Involve individuals with disabilities or their family
members, or both and persons who are members of groups that have
traditionally been underrepresented, as appropriate, in all stages of
research and related activities;
In the fourth year of the project, conduct a state-of-the-
science national conference to disseminate and discuss the results of
the research with researchers, policymakers, consumers, and other
stakeholders;
Coordinate with other entities carrying out related
research or training activities; and
Identify coordination responsibilities through
consultation with the NIDRR project officer.
Applicable Program Regulations: 34 CFR part 350.
Electronic Access to This Document
You may review this document, as well as all other Department of
Education documents published in the Federal Register, in text or Adobe
Portable Document Format (PDF) on the Internet at the following site:
www.ed.gov/legislation/FedRegister.
To use PDF you must have Adobe Acrobat Reader, which is available
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Note: The official version of this document is the document
published in the Federal Register. Free Internet access to the
official edition of the Federal Register and the Code of Federal
Regulations is available on GPO access at: http://
www.access.gpo.gov/nara/index.html.
(Catalog of Federal Domestic Assistance Number 84.133B,
Rehabilitation Research and Training Center.)
[[Page 35697]]
Program Authority: 29 U.S.C. 762(g) and 764(b)(2).
Dated: May 15, 2002.
Robert H. Pasternack,
Assistant Secretary for Special Education and Rehabilitative Services.
[FR Doc. 02-12619 Filed 5-17-02; 8:45 am]
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