E8-9237. National Institute on Disability and Rehabilitation Research-Disability and Rehabilitation Research Projects and Centers Program-Rehabilitation Research and Training Centers (RRTCs)

AGENCY:

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

ACTION:

Notice of proposed priorities for RRTCs.

SUMMARY:

The Assistant Secretary for Special Education and Rehabilitative Services proposes certain funding priorities for the Disability and Rehabilitation Research Projects and Centers Program administered by the National Institute on Disability and Rehabilitation Research (NIDRR). Specifically, this notice proposes four priorities for RRTCs. The Assistant Secretary may use these priorities for competitions in fiscal year (FY) 2008 and later years. We take this action to focus research attention on areas of national need. We intend these priorities to improve rehabilitation services and outcomes for individuals with disabilities.

DATES:

We must receive your comments on or before May 28, 2008.

ADDRESSES:

Address all comments about these proposed priorities to Donna Nangle, U.S. Department of Education, 400 Maryland Avenue, SW., Room 6029, Potomac Center Plaza (PCP), Washington, DC 20204-2700. If you prefer to send your comments through the Internet, use the following address: [e-mail].

You must include the priority title in the subject line of your electronic message.

FOR FURTHER INFORMATION CONTACT:

Donna Nangle. Telephone: [phone] or by e-mail: [e-mail].

If you use a telecommunications device for the deaf (TDD), you may call the Federal Relay Service (FRS) at 1-800-877-8339.

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:

This notice of proposed priorities is in concert with President George W. Bush's New Freedom Initiative (NFI) and NIDRR's Final Long-Range Plan for FY 2005-2009 (Plan). Background information on the NFI can be accessed on the Internet at the following site: http://www.whitehouse.gov/​infocus/​newfreedom.

The Plan, which was published in the Federal Register on February 15, 2006 (71 FR 8165), can be accessed on the Internet at the following site: http://www.ed.gov/​about/​offices/​list/​osers/​nidrr/​policy.html.

Through the implementation of the NFI and the Plan, NIDRR seeks to: (1) Improve the quality and utility of disability and rehabilitation research; (2) foster an exchange of expertise, information, and training to facilitate the advancement of knowledge and understanding of the unique needs of traditionally underserved populations; (3) determine best strategies and programs to improve rehabilitation outcomes for underserved populations; (4) identify research gaps; (5) identify mechanisms of integrating research and practice; and (6) disseminate findings.

Invitation To Comment

We invite you to submit comments regarding these proposed priorities. To ensure that your comments have maximum effect in developing the notice of final priorities, we urge you to identify clearly the specific proposed priority or topic that each comment addresses.

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 these 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 these proposed priorities in room 6029, 550 12th Street, SW., PCP, Washington, DC, between the hours of 8:30 a.m. and 4 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 these 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 one or more notices 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 using additional priorities, 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 in the Federal Register. When inviting applications we designate the priorities as absolute, competitive preference, or invitational. The effect of each type of priority follows:

Absolute priority: Under an absolute priority, we consider only applications that meet the priority (34 CFR 75.105(c)(3)).

Competitive preference priority: Under a competitive preference priority, we give competitive preference to an application by either (1) awarding additional points, depending on how well or the extent to which the application meets the competitive preference priority (34 CFR 75.105(c)(2)(i)); or (2) selecting an application that meets the competitive preference priority over an application of comparable merit that does not meet the priority (34 CFR 75.105(c)(2)(ii)).

Invitational priority: Under an invitational priority, we are particularly interested in applications that meet the invitational priority. However, we do not give an application that meets the invitational priority a competitive or absolute preference over other applications (34 CFR 75.105(c)(1)).

Priorities

In this notice, we are proposing four priorities for RRTCs.

• Priority 1—Enhancing the Functional and Employment Outcomes of Individuals Who Experience a Stroke.
• Priority 2—Enhancing the Functional and Employment Outcomes of Individuals With Multiple Sclerosis.
• Priority 3—Aging With Physical Disability: Reducing Secondary Conditions and Enhancing Health and Participation, Including Employment.
• Priority 4—Participation and Community Living for Individuals With Psychiatric Disabilities.

Rehabilitation Research and Training Centers (RRTCs)

The purpose of the RRTC program is to improve the effectiveness of services authorized under the Rehabilitation Act of 1973, as amended, through advanced research, training, technical assistance, and dissemination activities in general problem areas, as specified by NIDRR. Such activities are designed to benefit rehabilitation service providers, individuals with disabilities, and the family members or other authorized representatives of individuals with disabilities. In addition, NIDRR intends to require all RRTC applicants to meet the requirements of the General Rehabilitation Research and Training Centers (RRTC) Requirements priority, which was published in a notice of final priorities in the Federal Register on February 1, 2008 (72 FR 6132). Additional information on the RRTC program can be found at: http://www.ed.gov/​rschstat/​research/​pubs/​res-program.html#RRTC.

Statutory and Regulatory Requirements of RRTCs

RRTCs 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;
• Demonstrate in their applications how they will address, in whole or in part, the needs of individuals with disabilities from minority backgrounds;
• Disseminate informational materials to individuals with disabilities, their representatives, providers, and other interested parties; and
• Serve as centers of national excellence in rehabilitation research for individuals with disabilities, their representatives, providers, and other interested parties.

Priority 1—Enhancing the Functional and Employment Outcomes of Individuals Who Experience a Stroke

Background

According to the American Heart Association's most recent estimates, each year approximately 780,000 individuals in the United States (U.S.) experience a stroke and nearly 5.7 million individuals in the U.S. today have survived a stroke. Stroke patients continue to be the largest diagnostic group in medical rehabilitation, and stroke is a leading cause of serious, long-term physical and cognitive disabilities (American Heart Association, 2008).

Significant progress has been made in the development of rehabilitation interventions and in the assessment of outcomes for those who experience a stroke. An example of recent advances in rehabilitation interventions includes constraint-induced movement therapy. This repetitive training of the arms on task-oriented activities has been shown to improve the functional abilities of stroke survivors (Wolf et al., 2006). Another novel and promising technology that is in development is the BION, a family of implantable neuromuscular microstimulation devices that are designed to treat complications of paralysis and disuse atrophy, including shoulder subluxation, hand contractures, drop foot and osteoarthritis (Loeb et al., 2006).

Given the large and growing incidence of stroke in the U.S. and the high levels of physical and cognitive disabilities often associated with strokes, there is a need for further research on promising new interventions, such as CI therapy, bodyweight supported treadmill training (BWS-TT), electrical stimulation, and robotic technology (Bassett, 2006). In addition, research is needed to develop more sensitive measures of neuro-recovery and post-stroke secondary health conditions, as well as interventions to prevent a variety of post-stroke secondary health conditions, such as fatigue (Gladstone et al., 2002; Roth, 2005; Campbell, Sheets, & Strong, 1999).

Individuals who experience a stroke are at increased risk for depression, and depression among stroke survivors is associated with poor functional outcomes (Goodwin & Devanand, 2008).

Typical clinical assessments of depression ask patients questions to detect the presence of negative affect and the absence of positive affect. However, the connection between emotional well-being and stroke outcomes is not yet very well understood. Additional research is needed to investigate whether interventions aimed at improving an individual's level of positive affect can improve recovery from stroke.

Post-stroke rehabilitation interventions that focus on health and function and emotional well-being may improve employment outcomes of this population. Emotional well-being in the general population is related to many positive outcomes, including employment (Seligman, 1991, 2002). However, this connection has not been validated nor explored for the population of individuals with disabilities, including individuals who experience a stroke. The employment statistics for the post-stroke population are poor. Estimates of rates of return to work following stroke vary widely (Wozniak & Kittner, 2002). According to the U.S. Department of Education's Rehabilitation Services Administration's Case Service Report, also called the RSA-911 database, in 2006, of the more than 5,300 individuals with disabilities caused by a stroke who exited the State Vocational Rehabilitation Services program after receiving services, only about 25 percent were employed when they left the program.

References

American Heart Association (AHA) (2008). Heart Disease and Stroke Statistics—2008 Update At-A-Glance: Our Guide to Current Statistics and the Supplement to our Heart and Stroke Facts. See: http://www.americanheart.org/​downloadable/​heart/​1200078608862HS_​Stats%202008.final.pdf.

Bassett, J. (2006). A Lifelong Journey. Advance for Directors in Rehabilitation, 15(10), 42-48.

Campbell, M.L., Sheets, D., & Strong, P.S. (1999). Secondary health conditions among middle-aged individuals with chronic physical disabilities: implications for unmet needs for services. Assistive Technology. 11(2): 105-122.

Gladstone, D.J., Danells, C.J., & Black, S.E. (2002). The fugl-meyer assessment of motor recovery after stroke: a critical review of its measurement properties. Neurorehabilitation and Neural Repairs, 16(3): 232-40. See: http://www.medscape.com/​medline/​abstract/​12234086.

Goodwin, R.D. & Devanand, D.P. (2008). Stroke, depression, and functional health outcomes among adults in the community. Journal of Geriatric Psychiatry and Neurology. 21(1): 41-46.

Loeb, G.E., Richmond, F.J.R., & Baker, L.L. (2006). The BION Devices: Injectable interfaces with peripheral nerves and muscles. Neurosurgery Focus, 20(5) E2. See: http://www.medscape.com/​viewarticle/​542356.

Roth, E. (2005). Aging Issues: Neurological Disorders: crosscutting breakout session. Neurorehabilitation and Neural Repair, 10(1), S70.

Seligman, M.E.P. (1991). Learned Optimism. New York: Pocket Books.

Seligman, M.E.P. (2002). Authentic Happiness. Simon & Schuster.

U.S. Department of Education: Case Service Report (RSA-911), FY 2006. (2006). Washington, DC. Aggregated 911 data by state is available. See: http://rsamis.ed.gov.

Wolf, S.L., Weinstein, C.J., Miller, J.P., Taub, E., Uswatte, G., Morris, D., Giuliani, C., Light, K.E., & Nichols-Larsen, D. (2006). Effect of constraint-induced movement therapy on upper extremity function 3 to 9 months after stroke. Journal of the American Medical Association, 296(17), 2095-2104.

Wozniak, M. & Kittner, S. (2002). Return to Work After Ischemic Stroke: A Methodological Review. Neuroepidemiology, 21, 159-166.

Proposed Priority

The Assistant Secretary for Special Education and Rehabilitative Services proposes a priority for a Rehabilitation Research and Training Center (RRTC) on Enhancing the Functional and Employment Outcomes of Individuals Who Experience a Stroke. This RRTC must conduct rigorous research, training, technical assistance, and dissemination activities to enhance the functional and employment outcomes of individuals who experience a stroke.

In doing so, the RRTC must focus on no more than two of the following dimensions: Improved mobility; secondary conditions (e.g., pain, fatigue); and emotional well-being. Under this priority, the RRTC must be designed to contribute to the following outcomes:

(a) Improved outcome measures for use with individuals who experience a stroke. The RRTC must contribute to this outcome by identifying or developing and testing methods and measures to assess outcomes in the dimensions that the RRTC chooses to focus on (e.g., mobility, secondary conditions, emotional well-being).

(b) Improved medical rehabilitation or community-based rehabilitation interventions for individuals who experience a stroke. The RRTC must contribute to this outcome by identifying or developing and testing new rehabilitation interventions that are designed to improve mobility, reduce the onset of secondary conditions, or improve emotional well-being among individuals who have experienced a stroke. Where possible, the Center must use scientifically based research (as this term is defined in section 9101(34) of the Elementary and Secondary Education Act of 1965, as amended) methods to test these interventions.

(c) Improved employment outcomes among individuals who experience a stroke. The RRTC must contribute to this outcome by conducting research on the experiences and outcomes of individuals who experience stroke and who seek to return to work. The RRTC's research must include research on individuals who are served by the State Vocational Rehabilitation Services program or who receive stroke/neuro-rehabilitation services from other sources, and must identify neuro-rehabilitation services that are associated with positive outcomes in the treatment of specific stroke-related impairments and functional limitations thereby allowing individuals to return to work.

Priority 2—Enhancing the Functional and Employment Outcomes of Individuals With Multiple Sclerosis

Background

While prevalence estimates vary, according to the National Multiple Sclerosis Society, approximately 400,000 Americans have multiple sclerosis (MS) (National Multiple Sclerosis Society, 2005). For most individuals, the age of onset for the disease is in early adulthood. Individuals with MS may have symptoms such as fatigue, motor weakness, spasticity, poor balance, heat sensitivity, pain, cognitive impairments, and mood disorders (Wynn, 2006; Mikol, 2006). The variety of symptoms that an individual with MS may experience and the uncertain prognosis of MS can impair an individual's routine activities; vocational, social, and interpersonal functioning; and quality of life (Kalb, 2004).

While some research has been conducted regarding the functional outcomes of individuals with MS, there is a significant need for further research in the areas of outcomes measurement and rehabilitation interventions to maximize the health, well-being, and community and workplace participation of individuals with MS. Experienced MS care providers participating in a recent survey identified a number of areas in which clinical consultation and continuing medical education (CME) would improve their ability to treat individuals with MS, and the wide range of symptoms associated with MS (Turner et al., 2006). Fatigue, depression, cognitive impairment, and pain were among the most frequently cited areas for consultation and CME (Mikol, 2006). Research that addresses the frequent co-occurrence of these four symptoms, and the effect of central-nervous-system-active medications that are typically used to treat them, is also needed (Oken et al., 2006). For individuals with MS, there is a “continued need for effective therapeutic approaches to symptom management” (Joy & Johnston, 2001).

The relatively early age of onset, the variety of symptoms and secondary conditions associated with MS, and the intermittent and uncertain course of the disease present a variety of challenges to continuous participation by individuals with MS in the labor force. Estimates are that as many as 50 percent of individuals with MS report they cannot work due to their disabilities (Buchanan et al., 2006). Interventions to improve the health and function of individuals with MS may improve their employment outcomes. Recent data from the U.S. Department of Education's Rehabilitation Services Administration's Case Service Report, also called the RSA-911 database, suggest that vocational rehabilitation services can be improved for this population. According to the RSA-911 database, in 2006, of the more than 3,000 individuals with MS who exited the State Vocational Rehabilitation Services program, after being determined eligible and receiving a service, only one-third were employed when they exited the program.

References

Buchanan, R.J., Schiffer, R., Stuifbergen, A., Zhu, L., Wang, S., Chakravorty, B.J., & Kim, M. (2006). Demographic and Disease Characteristics of People with Multiple Sclerosis Living in Urban and Rural Areas. International Journal of MS Care, 8(11), 89-97.

Joy, J.E. & Johnston, R.B. (Eds.). (2001). Multiple Sclerosis: Current Status and Strategies for the Future. Washington, D.C.: National Academy Press.

Kalb, R.C. (2004). Multiple Sclerosis: The Questions You Have—The Answers You Need, 3rd Edition. New York: Demos Medical Publishing.

National Multiple Sclerosis Society (2005). Multiple Sclerosis Information Sourcebook. New York: National Multiple Sclerosis Society. See: http://www.nationalmssociety.org/​Sourcebook-Topic.asp.

Oken, B.S., Flegal, K., Zajdel, D., Kishiyama, S.S., Lovera, J., Bagert, B., & Bourdette, D.N. (2006). Cognition and Fatigue in Multiple Sclerosis: Potential Effects of Medications With Central Nervous System Activity. Journal of Rehabilitation Research & Development, 43(1), 83-90.

Turner, A.P., Martin, C., Williams, R.M., Goudreau, K., Bowen, J.D., Hatzakis, M., Whitham, R.H., Bourdette, D.N., Walker, L., & Haselkorn, J.K. (2006). Exploring Educational Needs of Multiple Sclerosis Care Providers: Results of a Care-Provider Survey. Journal of Rehabilitation Research & Development, 43(1), 25-34.

U.S. Department of Education: Case Service Report (RSA-911), FY 2006. (2006). Washington, DC: Author.

Wynn, D.R. (2006). Management of Physical Symptoms. International Journal of MS Care, 8, Supplement 1, 13-20.

Proposed Priority

The Assistant Secretary for Special Education and Rehabilitative Services proposes a priority for a Rehabilitation Research and Training Center (RRTC) on Enhancing the Functional and Employment Outcomes of Individuals With Multiple Sclerosis. This RRTC must conduct rigorous research, training, technical assistance, and dissemination activities to enhance the functional and employment outcomes of individuals with multiple sclerosis (MS).

In doing so, the RRTC must focus on how one or both of the following dimensions affect the employment outcomes of individuals with MS: The prevention or reduction of secondary conditions (e.g., pain, fatigue, depression, cognitive impairment) and improved mobility. Under this priority, the RRTC must be designed to contribute to the following outcomes:

(a) Improved outcome measures for use with individuals with MS. The RRTC must contribute to this outcome by identifying or developing and testing methods and measures to assess outcomes in the dimensions on which the RRTC chooses to focus.

(b) Improved medical rehabilitation or community-based rehabilitation interventions. The RRTC must contribute to this outcome by improving the ability of individuals with MS to remain in the workforce and to live in community-based settings through identifying or developing and testing new rehabilitation interventions. Where possible, the Center must use scientifically based research (as this term is defined in section 9101(34) of the Elementary and Secondary Education Act of 1965, as amended) methods to test these interventions.

(c) Improved employment outcomes among individuals with MS. The RRTC must contribute to this outcome by conducting research on the experiences and outcomes of individuals with MS who are served by the State Vocational Rehabilitation Services program or who receive MS-rehabilitation services from other sources, and by identifying rehabilitation services that are associated with the reduction of specific MS-related symptoms and functional limitations. Research must include investigation of job modifications and accommodations associated with successful employment.

Priority 3—Aging With Physical Disability: Reducing Secondary Conditions and Enhancing Health and Participation, Including Employment

Background

With recent medical and technological advancements, many individuals with early onset of physical disabilities acquired at birth or in childhood or young adulthood are surviving long enough to experience the rewards and challenges of aging (Campbell, Sheets, & Strong, 1999). Determining the size of this emerging segment of the disabled population has been difficult due to the lack of sufficient population data on age of onset and duration of disability (Kemp, 2005). The only national estimate available to date comes from a secondary analysis of the 1990 U.S. Census data, which suggests that there may be as many as 25,000,000 Americans who are aging with various long-term physical disabilities (McNeil, 1994).

As many researchers have documented, a primary challenge associated with increased longevity among this population is an increased risk of secondary conditions (Kemp & Mosqueda, 2004). Although there is widespread agreement that secondary conditions can be debilitating, costly in terms of financial and social consequences, and potentially fatal in some circumstances, how to define secondary conditions remains an active debate within the disability community (Wilber et al., 2002; Rimmer, 2005).

While a precise definition of secondary conditions is still evolving, the emerging consensus is that secondary conditions often increase the severity of an individual's physical disability (Brandt & Pope, 1997). As individuals with long-term physical disabilities age into middle and later adulthood, there is an enormous physical and psychological burden associated with having to manage various secondary health conditions, in addition to managing the chronic health effects related to the aging process generally (Rimmer, 2005). There is, however, widespread agreement that certain secondary conditions are preventable, and that learning how to prevent the onset or reduce the severity and impact of these new or increased impairments, functional limitations, and age-related health problems is vital to enhancing the health and participation of individuals aging with long-term physical disabilities (Simeonsson et al., 1999; Lollar, 2002; Wilber et al., 2002).

To date there are no national estimates of the number of individuals with long-term physical disabilities who are experiencing one or more types of secondary conditions. Most of what is known about the prevalence and consequences of secondary conditions for health and participation comes from clinical studies of patients, a handful of community-based studies and secondary analyses of population surveys, and the evolving theoretical understanding of the general aging process (Cristian, 2005; Kemp, 2005; Seekins et al., 1994; Campbell, Sheets, & Strong, 1999; Wilber et al., 2002; Verbrugge & Yang, 2002; Kinne et al., 2004).

Results of these studies underscore the importance of improving treatment options to prevent or reduce the consequences of secondary conditions. Exercise, lifestyle and behavioral changes, and psychosocial and environmental factors are known to influence the development of secondary health conditions (Seekins et al., 1994; Wilber et al., 2002; Kemp, 2005; Rimmer, 2005). However, research on these factors has been limited by the lack of measurement tools to characterize the types and severity of secondary conditions experienced by individuals aging with physical disabilities, and the lack of experimental and quasi-experimental studies to test the effectiveness of various intervention strategies (Wilber et al., 2002; Rimmer, 2005).

The variety of secondary conditions that individuals aging with physical disability are at risk of developing, and the relatively early age of onset of those conditions, pose challenges to maintaining their participation in the labor force. In some cases, secondary conditions can lead to premature retirement and the loss of economic self-sufficiency. The employment consequences of aging with a physical disability have yet to be examined in large-scale national surveys. However, results of a recent quasi-experimental study indicate that those aging with polio, cerebral palsy, rheumatoid arthritis, and stroke reported a 50 percent reduction in employment compared to a 35 percent reduction for the non-disabled comparison group (Mitchell, Adkins, & Kemp, 2006). Given the economic consequences of premature disruptions in labor force participation, vocational rehabilitation strategies need to be identified and tested for their effectiveness in improving the employment outcomes of the growing segment of the population experiencing the challenges of aging with long-term physical disabilities.

References

Brandt, E.N. & Pope, A.M. (1997). Enabling America: Assessing the Role of Rehabilitation Science and Engineering. Committee on Disability Research, Institute of Medicine, National Academy of Sciences. Washington, DC: National Academies Press.

Campbell, M.L., Sheets, D.S., & Strong, P.S. (1999). Secondary health conditions among middle-aged individuals with chronic physical disabilities: Implications for “unmet needs” for services. Assistive Technology, 11(2), 3-18.

Cristian, A. (Ed.) (2005). Aging with a Disability: Physical Medicine and Rehabilitation Clinics of North America 16. Oxford, UK: Elsevier.

Kemp, B.J. (2005). What the rehabilitation professional and the consumer need to know. In Adrian Cristian (ED), Aging with a Disability: Physical Medicine and Rehabilitation Clinics of North America, 16 (pp. 1-18). Oxford, UK: Elsevier.

Kemp, B.J. & Mosqueda, L. (Eds.) (2004). Aging with a Disability. Baltimore: The Johns Hopkins University Press.

Kinne, S., Patrick, D.L., & Lochner, D.D. (2004). Prevalence of secondary conditions among people with disabilities. American Journal of Public Health, 94(3), 443-445.

Lollar, D. (2002). Public health and disability: emerging trends. Public Health Report, 117, 131-136.

McNeil, J. (1994). Americans with Disabilities, Bureau of the Census, Statistical Brief, SB/94-1.

Mitchell, J.M., Adkins, R.H., & Kemp, B.J. (2006). The effects of aging on employment of people with and without disabilities. Rehabilitation Counseling Bulletin, 49(3), 157-165.

Rimmer, J.L. (2005). Exercise and physical activity in persons aging with a physical disability. In A. Cristian (Ed), Aging with a Disability: Physical Medicine and Rehabilitation Clinics of North America, 16, (pp. 41-56). Oxford, UK: Elsevier.

Seekins, T., Clay, J., & Ravesloot, C.H. (1994). A descriptive study of secondary conditions reported by a population of adults with physical disabilities served by 3 independent living centers in a rural state. Journal of Rehabilitation, 60, 47-51.

Simeonsson, R.J., Bailey, D.B., Scandlin, D., Huntington, G.S., & Roth, M. (1999). Disability, health, secondary conditions and quality of life: Emerging issues in public health. In R.J. Simeonsson & L.N. McDevitt (Eds.), Issues in Disability and Health: The Role of Secondary Conditions and Quality of Life (pp. 51-72). Chapel Hill: University of North Carolina Press.

Wilber, N., Mitra, M., Walker, D.K., Allen, D., Meyers, A.R., & Tupper, P. (2002). Disability as a public health issue: Findings and reflections from the Massachusetts Survey of Secondary Conditions. Milbank Quarterly, 80, 393-421.

Verbrugge, L.M., & Yang, L. (2002). Aging with Disability and Disability with Aging. Journal of Disability Policy Studies, 12(4), 253-267.

Proposed Priority

The Assistant Secretary for Special Education and Rehabilitative Services proposes a priority for a Rehabilitation Research and Training Center (RRTC) on Aging With Physical Disability: Reducing Secondary Conditions and Enhancing Health and Participation, Including Employment. This RRTC must conduct rigorous research, training, technical assistance, and dissemination activities to improve rehabilitation outcome measures and rehabilitation interventions that can be applied in clinical or community-based settings and used by other researchers. The intended outcome of the RRTC is to enhance community participation, including employment, of individuals aging with long-term physical disabilities by advancing knowledge about the identification, assessment, treatment, and improved management of the secondary conditions likely experienced by individuals aging with a physical disability.

In addressing this priority, the RRTC must propose a limited number of high-quality, cross-disability research projects to address the secondary conditions that are most relevant to the lives of individuals with physical disabilities. To ensure the feasibility of the RRTC's proposed activities and increase the likelihood of achieving planned outcomes, the RRTC must focus on two to four discrete impairment groups (e.g., spinal cord injury, cerebral palsy, multiple sclerosis, rheumatoid arthritis, stroke, post-polio), and must limit intervention strategies to no more than two of the following modalities: Exercise, health promotion, psychological adaptation, life planning or self-management skills, and environmental or technological supports. Under this priority, the RRTC must be designed to contribute to the following outcomes:

(a) Enhanced understanding of the natural course of aging with a physical disability. The RRTC must contribute to this outcome by documenting the life trajectories and average age of onset of the major types of secondary conditions experienced by individuals living with long-term physical disabilities in the selected impairment groups, and examining the interrelationships among different types of secondary conditions and the consequences of variations in timing of onset for health and community participation.

(b) Improved tools and measures for use with individuals aging with long-term physical disabilities. The RRTC must contribute to this outcome by identifying, developing or modifying, and testing measurement tools that improve the identification and assessment of the major types of secondary conditions affecting individuals in the selected impairment groups, as well as the outcomes of interventions designed to prevent or reduce these conditions.

(c) Improved rehabilitation or community-based interventions that enhance the health and participation in work and the community of individuals aging with physical disabilities. The RRTC must contribute to this outcome by identifying, developing or modifying, and testing interventions that show promise in preventing the onset of or improving the management and reducing the impact of secondary conditions on individuals in the selected impairment groups. Where possible, the Center must use scientifically based research (as this term is defined in section 9101(34) of the Elementary and Secondary Education Act of 1965, as amended) methods to test these interventions.

(d) Improved employment outcomes among working-age individuals aging with long-term physical disabilities. The RRTC must contribute to this outcome by conducting research on the experiences, including employment outcomes, of individuals aging with long-term physical disabilities in the selected impairment groups who are served by the State Vocational Rehabilitation Services program or who receive rehabilitation services from other sources, and by identifying specific secondary conditions that require improved and unique vocational rehabilitation services and approaches.

Priority 4—Participation and Community Living for Individuals With Psychiatric Disabilities

Background

Individuals with psychiatric disabilities have one of the lowest rates of employment of any disability group—only one in three individuals with psychiatric disabilities in the United States is employed (Kaye, 2002). They also comprise the largest diagnostic category of working-age adults receiving Supplemental Security Income or Social Security Disability Insurance (McAlpine and Warner, 2001).

In addition, individuals with psychiatric disabilities constitute a large proportion of the homeless population. Of 2 million adults experiencing an episode of homelessness, for example, 46 percent have a psychiatric disability (Burt, 2001).

In April 2002, the President signed Executive Order 13263 establishing a New Freedom Commission on Mental Health, and charged the Commission with completing a comprehensive study of the mental health service delivery system in the United States. The Commission's report, Achieving the Promise: Transforming Mental Health Care in America, set the course for public and private efforts across the country to improve the state of mental health care (New Freedom Commission on Mental Health, 2003). The Commission calls for a transformation of the mental health service delivery system, focusing on recovery and resilience for individuals with psychiatric disabilities. As stated in the Commission's report, recovery is, in part, “the process in which people are able to live, work, learn, and participate fully in their communities,” while resilience indicates “the personal and community qualities that enable us to rebound from adversity, trauma, tragedy, threats, or other stresses—and to go on with life with a sense of mastery, competence, and hope” (New Freedom Commission on Mental Health, 2003).

Federal legislation has long aimed to facilitate the full inclusion of individuals with psychiatric disabilities into the mainstream of society. For example, the centers for independent living, established by title VII of the Rehabilitation Act of 1973, as amended, provide information and referral, advocacy, peer support, and independent living skill building to individuals with disabilities, including individuals with psychiatric disabilities. Grantee-reported data from the U.S. Department of Education's Centers for Independent Living program indicate that nearly 31,000 individuals with psychiatric disabilities were served by centers for independent living in 2006. However, there is a general lack of evidence on what independent living services are most effective in addressing the needs of individuals with psychiatric disabilities. Increased knowledge in this area could lead to more effective independent living services for individuals with psychiatric disabilities, and result in enhanced community living and participation for this population.

In addition, there is a strong need for research on understudied aspects of community participation and community living for individuals with psychiatric disabilities. Two examples, among many, are emergency preparedness and mental health disparities for traditionally underserved populations (e.g., individuals from diverse racial, ethnic, and linguistic backgrounds, and individuals with multiple disabilities) with psychiatric disabilities (National Council on Disability, 2006; New Freedom Commission on Mental Health, 2003; U.S. Public Health Service, Office of the Surgeon General, 2001).

According to the Institute on Medicine report, Crossing the Quality Chasm: A New Health System for the 21st Century, the time lag between the discovery of effective medical treatments and the incorporation of those treatments into practice is 15 to 20 years. The President's New Freedom Commission on Mental Health called for a reduction in this delay as part of an overall transformation of mental health care in America (Substance Abuse and Mental Health Services Administration, 2005; New Freedom Commission on Mental Health, 2003; Institute of Medicine, 2001).

References

Burt, M.R. (2001). What will it take to end homelessness? Urban Institute Brief. Washington, DC: Urban Institute.

Institute of Medicine. (2001). Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press.

Kaye, H.S. (2002). Employment and Social Participation Among People with Mental Health Disabilities. San Francisco, CA: National Disability Statistics & Policy Forum.

McAlpine, D.D. & Warner, L. (2001). Barriers to Employment Among Persons with Mental Illness: A Review of the Literature. New Brunswick, NJ: Institute for Health.

National Council on Disability (July 7, 2006). The Needs of People with Psychiatric Disabilities During and After Hurricanes Katrina and Rita: Position Paper and Recommendations. Washington, DC: Author. http://www.ncd.gov/​newsroom/​publications/​2006/​peopleneeds.htm.

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Proposed Priority

The Assistant Secretary for Special Education and Rehabilitative Services proposes a priority for a Rehabilitation Research and Training Center (RRTC) on Participation and Community Living for Individuals With Psychiatric Disabilities. The RRTC must conduct rigorous research, training, technical assistance, and dissemination activities that contribute to improved community participation and community living outcomes for individuals with psychiatric disabilities. Under this priority, the RRTC must be designed to contribute to the following outcomes:

(a) Improved individual and system capacity to maximize the involvement of individuals with psychiatric disabilities in community life. The RRTC must contribute to this outcome by:

(1) Generating new knowledge through research on effective strategies to meet the needs of individuals with psychiatric disabilities who are served by centers for independent living and identifying independent living services and service-delivery approaches that meet the unique needs of this population.

(2) Increasing the knowledge base and advancing the application of theories, measures, methods, or interventions that facilitate participation and community living of individuals with psychiatric disabilities. In this regard, the RRTC must focus its efforts on at least three of the following areas: Employment, housing, education, health and mental health care, recreation, social relationships, or other public and private sector activities related to community living. If the Center engages in interventions testing, the Center must use scientifically based research (as this term is defined in section 9101(34) of the Elementary and Secondary Education Act of 1965, as amended) methods.

(3) Reducing disparities in service delivery and program development by focusing its work on one or more of the following understudied areas: (i) Emergency preparedness for individuals with psychiatric disabilities; (ii) individuals with psychiatric disabilities from diverse racial, ethnic, and linguistic backgrounds; or (iii) individuals with psychiatric disabilities who have co-occurring sensory or physical disabilities.

(b) Increased incorporation of mental health research findings into practice or policy. The RRTC must contribute to this outcome by coordinating with appropriate NIDRR-funded knowledge translation grantees to advance or add to their work in the following areas:

(1) Developing and implementing procedures to evaluate the readiness of mental health research findings for translation into practice.

(2) Collaborating with stakeholder groups to develop, evaluate, or implement strategies to increase utilization of mental health research findings.

(3) Conducting training, technical assistance, and dissemination activities to increase utilization of mental health research findings.

Information on knowledge translation projects funded by NIDRR can be found at http://www.naric.com/​research/​pd/​priority.cfm.

Executive Order 12866

This notice of proposed priorities has been reviewed in accordance with Executive Order 12866. Under the terms of the order, we have assessed the potential costs and benefits of this regulatory action.

The potential costs associated with this notice of proposed priorities are those resulting from statutory requirements and those we have determined as necessary for administering this program effectively and efficiently.

In assessing the potential costs and benefits—both quantitative and qualitative—of this notice of proposed priorities, we have determined that the benefits of the proposed priorities justify the costs.

Summary of Potential Costs and Benefits

The benefits of the Disability and Rehabilitation Research Projects and Centers Programs have been well established over the years in that similar projects have been completed successfully. These proposed priorities will generate new knowledge and technologies through research, development, dissemination, utilization, and technical assistance projects.

Another benefit of these proposed priorities is that the establishment of new RRTCs will support the President's NFI and improve the lives of individuals with disabilities. The new RRTCs will generate, disseminate, and promote the use of new information that will improve employment and community living options for individuals with disabilities.

Intergovernmental Review

This program is not subject to Executive Order 12372 and the regulations in 34 part 79.

Applicable Program Regulations: 34 CFR part 350.

Electronic Access to This Document

You may view 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: http://www.ed.gov/​news/​fedregister.

To use PDF you must have Adobe Acrobat Reader, which is available free at this site. If you have questions about using PDF, call the U.S. Government Printing Office (GPO), toll free, at 1-888-293-6498; or in the Washington, DC, area at [phone].

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.gpoaccess.gov/​nara/​index.html.

(Catalog of Federal Domestic Assistance Numbers 84.133B Rehabilitation Research and Training Centers Program)

Program Authority: 29 U.S.C. 762(g) and 764(b)(2).

Dated: April 23, 2008.

Tracy R. Justesen,

Assistant Secretary for Special Education and Rehabilitative Services.