[Federal Register: May 20, 2002 (Volume 67, Number 97)]
[Page 35691-35697]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]

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Part IV

Department of Education


National Institute on Disability and Rehabilitation Research; Notice

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National Institute on Disability and Rehabilitation Research

AGENCY: Office of Special Education and Rehabilitative Services, 
Department of Education.

ACTION: Notice of proposed priorities.


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: 
    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-
    If you use a telecommunications device for the deaf (TDD), you may 
call the TDD number at (202) 205-4475 or via the Internet: 
    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 


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 

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 
    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 

    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/
    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: 

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/

General Requirements

    The RRTC must:
     Carry out coordinated advanced programs of rehabilitation 
     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 
     Disseminate informational materials to individuals with 
disabilities, their representatives, providers, and other interested 
     Serve as centers for national excellence in rehabilitation 
research for individuals with disabilities, their representatives, 
providers, and other interested parties.


Aging-Related Changes in Impairment for Persons Living With Physical 

    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 
    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://
    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

    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/
    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/
    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://
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 
    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; 
    (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 
     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.

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the Washington, DC, area at (202) 512-1530.

    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://

(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]