National Institute on Disability and Rehabilitation Research; Notice of Proposed Priorities

AGENCY:

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

ACTION:

Notice of proposed priorities for health and function outcomes for individuals with disabilities.

SUMMARY:

The Assistant Secretary for Special Education and Rehabilitative Services proposes priorities under the Rehabilitation Research and Training Centers (RRTC) Program for the National Institute on Disability and Rehabilitation Research (NIDRR). The Assistant Secretary may use one or more of these priorities for competitions in fiscal year (FY) 2004 and later years. We take this action to focus research attention on areas of national need. We intend these priorities to improve health and function outcomes for individuals with disabilities.

DATES:

We must receive your comments on or before April 27, 2004.

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.

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 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 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 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 3412, Switzer Building, 330 C Street, SW., 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 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 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 published in the Federal Register. When inviting applications, we designate each priority 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 priority (34 CFR 75.105(c)(2)(i)); or (2) selecting an application that meets the competitive priority over an application of comparable merit that does not meet the competitive 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)).

Note:

NIDRR supports the goals of 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.

These proposed priorities are in concert with NIDRR's 1999-2003 Long-Range Plan (Plan). The Plan is comprehensive and integrates many issues relating to disability and rehabilitation research topics. While applicants will find many sections throughout the Plan that support potential research to be conducted under these proposed priorities, a specific reference is included for each priority presented in this notice. The Plan can be accessed on the Internet at the following site: http://www.ed.gov/rschstat/research/pubs/index.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.

Rehabilitation Research and Training Centers

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 disability conditions, or promote maximum social and economic independence for persons with disabilities. Additional information on the RRTC program can be found at: http://www.ed.gov/rschstat/research/pubs/res-program.html#RRTC.

General Requirements of Rehabilitation Research and Training Centers

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;
• Disseminate informational materials to individuals with disabilities, their representatives, providers, and other interested parties; and
• Serve as centers for national excellence in rehabilitation research for individuals with disabilities, their representatives, providers, and other interested parties.

The Department is particularly interested in ensuring that the expenditure of public funds is justified by the execution of intended activities and the advancement of knowledge and, thus, has built this accountability into the selection criteria. Not later than three years after the establishment of any RRTC, NIDRR will conduct one or more reviews of the activities and achievements of the RRTC. In accordance with the provisions of 34 CFR 75.253(a), continued funding depends at all times on satisfactory performance and accomplishment of approved grant objectives.

Proposed Priorities

The Assistant Secretary proposes to fund three RRTCs that will focus on improved outcomes measures, health status, and rehabilitation of persons with traumatic brain injury to facilitate the ability of individuals with disabilities to live in the community. Under each of these priorities, the RRTC must:

(1) Contribute substantially to the scientific knowledge-base relevant to its respective subject area;

(2) Research, develop, and evaluate interventions or tools to assist with outcomes for its focus area;

(3) Develop, implement, and evaluate a comprehensive plan for training critical stakeholders (e.g., consumers/family members, practitioners, service providers, researchers, and policymakers);

(4) Provide technical assistance, as appropriate, to critical stakeholders, (e.g., consumers/family members, practitioners, and service providers) to facilitate utilization of research findings in its respective area of research; and

(5) Develop a systematic plan for focused dissemination of informational materials based on knowledge gained from the RRTC's research activities, and disseminate the materials to persons with disabilities, their representatives, service providers, and other interested parties.

In addition to these activities, we propose that under each of the priorities, the RRTC must:

• Conduct a state-of-the-science conference on its respective area of research in the third year of the grant cycle and publish a comprehensive report on the final outcomes of the conference in the fourth year of the grant cycle. This conference must include materials from experts internal and external to the RRTC;
• Coordinate on research projects of mutual interest with relevant NIDRR-funded projects as identified through consultation with the NIDRR project officer;
• Involve individuals with disabilities, including those from diverse racial and ethnic backgrounds, in planning and implementing its research, training, and dissemination activities, and in evaluating the RRTC;
• Demonstrate in its application how it will address, in whole or in part, the needs of individuals with disabilities from minority backgrounds; and
• Articulate goals, objectives, and expected outcomes for the proposed research activities. It is critical that proposals describe expected public benefits, especially benefits for individuals with disabilities, and propose projects that are designed to demonstrate outcomes that are consistent with the proposed goals. Applicants must include information describing how they will measure outcomes, including the indicators that will represent the end-result, the mechanisms that will be used to evaluate outcomes associated with specific problems or issues, and how the proposed activities will support new intervention approaches and strategies, including a discussion of measures of effectiveness.

Priorities

Each RRTC must focus research on one of the following priorities:

Proposed Priority 1—Measuring Rehabilitation Outcomes and Effectiveness

Background

In a research environment increasingly driven by the demand for evidence-based practice, it is becoming even more necessary to develop and use measures to evaluate the effectiveness and efficacy of interventions and their value to individuals with disabilities. Despite significant investment in development of measures, there is general agreement that much remains to be done. This changing environment necessitates the development, evaluation, and application of the next generation of rehabilitation outcomes measures. These measures must be valid, reliable, efficiently collected, relevant to the lives of people with disabilities, and easily utilized to drive decisions made by key rehabilitation stakeholders. Changing rehabilitation payment structures and clinical pathways are necessitating the development of outcome measures that can be applied across the spectrum of acute and post-acute care settings. Through their report entitled “Crossing the Quality Chasm: A New Health System for the 21st Century,” the Institute of Medicine (IOM) emphasizes the importance of transparency and accountability in the health care delivery system (Institute of Medicine, 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academy Press).

Collecting rehabilitation outcomes is labor intensive in any setting. Applications of item-response theory and computerized dynamic assessment technologies, which have been successfully applied in the fields of education and psychology, have great potential to increase efficiency and precision of rehabilitation outcomes data collection and measurement (Ware, J. 2003. Conceptualization and Measurement of Health-Related Quality of Life: Comments on an Evolving Field. Archives of Physical Medicine and Rehabilitation, 84(4 Suppl 2): S43-S51). Further application of these state-of-the-art computer-based measurement and analysis methods in medical rehabilitation will complement the Institute of Medicine's recommendations for the development of a national health care information-technology infrastructure (Institute of Medicine (2003a). Patient Safety: Achieving a New Standard for Care. Washington, DC: National Academies Press).

Evolving disability classification frameworks such as the International Classification of Functioning, Disability, and Health (ICF) (World Health Organization. International Classification of Functioning, Disability, and Health; ICF. Geneva: World Health Organization) emphasize the importance of participation in a wide variety of life situations. In order to apply such frameworks to medical rehabilitation services and research, it is necessary to develop measurement tools that can assess participation and link this outcome to interventions in the rehabilitation setting.

Priority: This center must conduct research to advance the field of medical rehabilitation by increasing the utility, efficiency, and relevance of its outcomes measurement tools and processes. The research funded under this priority must be designed to contribute to the following outcomes:

• Improved measurement tools that can be used to track the outcomes of individuals across a wide variety of rehabilitation settings.
• Improved measurement tools that incorporate consumer perspectives to assess long-term community integration outcomes within a comprehensive model for evaluating rehabilitation effectiveness, such as the ICF.
• Increased efficiency of rehabilitation outcomes data collection, through the application of strategies such as item response theory and computer adaptive testing techniques.
• Identification of effective methods for translating outcomes data into information that can be utilized to inform decisions made by key rehabilitation stakeholders, including consumers, payers, provider organizations, and clinicians.

The reference for this topic can be found in the Plan, chapter 4, Health and Function: Research on Rehabilitation Outcomes, pp. 49-50.

Proposed Priority 2—Health and Wellness in Long-Term Disability

Background

Healthy People 2010 reports on the health status disparity between people with disabilities and people without disabilities (U.S. Department of Health and Human Services. Healthy People 2010 Washington, DC: Office of Disease Prevention and Health Promotion, 2001). On average, health status decreases as the severity of one's disability increases. For older people with disabilities, this relationship is even stronger. (U.S. Census Bureau. Americans with Disabilities: Household Economic Status Washington DC: U.S. Census Bureau, 2001).

Despite this established empirical correlation, health and disability are separate and distinct concepts that must be measured on separate scales. Research has demonstrated that concepts of health status are commonly merged with concepts of disability. New measures of health status are needed that are relevant to the experiences of persons with long-term disability to facilitate assessment of health promotion and wellness activities among this population.

NIDRR-funded research on aging, disability and secondary conditions has identified factors associated with health and wellness outcomes for individuals with disabilities. Access to primary (routine) health care is one factor that may affect health status of individuals with disabilities. Pain management, exercise, and nutrition counseling are critical interventions to counteract the results of increasingly sedentary lifestyles of persons with long-term disability (Campbell, ML, Sheets, D, Strong, PS. Secondary Health Conditions Among Middle-Aged Individuals with Chronic Physical Disabilities: Implications for unmet needs for services. Assistive Technology; 11: 105-122, 1999; Motszko M, Preventing osteoporosis. Lifelong nutrition and exercise habits are the most powerful weapons. Advanced Nurse Practitioner; Jul: 10 (7): 41-3, 76, 2002). Rehabilitation researchers have also identified complementary and alternative therapies that may promote or contribute to improved health and wellness for persons with disabilities (Shiffett, SC. Acupuncture and Stroke Rehabilitation. Stroke; 32(8); 1934-6-9, 2001).

Priority: This center must conduct research that will help to overcome the health disparities of individuals with disabilities compared to individuals without disabilities. The research funded under this priority must be designed to contribute to the following outcomes:

• Identification of strategies to overcome barriers that impede access to routine healthcare for individuals with disabilities.
• Identification of interventions in areas such as exercise, nutrition, pain management, or complementary and alternative therapies, that promote health and wellness and minimize the occurrence of secondary conditions for persons with disabilities.
• Improved health status measurement tool(s) to assess health and well-being of individuals with disability regardless of functional ability.

The reference for this topic can be found in the Plan, chapter 4, Health and Function: Health Care at the Individual Level; Health Care at the Systems Level, pp. 42-43.

Proposed Priority 3—Traumatic Brain Injury (TBI) Interventions

Background

An estimated 5.3 million Americans currently live with disabilities resulting from traumatic brain injury (TBI). As stated in the 1998 National Institutes of Health (NIH) Consensus Conference Proceedings, “TBI may result in lifelong impairment of an individual's physical, cognitive, and psychosocial functioning.” Among children up to age 14, TBI results annually in an estimated 3,000 deaths, 29,000 hospitalizations, and 400,000 emergency department visits. A working group convened by the National Center for Injury Prevention and Control at the CDC in October, 2000 called for more research on patterns of recovery, secondary conditions, effectiveness of treatment, and issues of measurement for this population. At the September 2003, NIDRR-funded State of the Science Conference on TBI Interventions, levels of evidence for many interventions in TBI rehabilitation were characterized as inconclusive.

Priority: This center must conduct research to improve long-term outcomes for persons with TBI. The research funded under this priority must be designed to contribute to one of the following outcomes:

• Identification of interventions that demonstrate efficacy, or effectiveness, or both, in promoting improved rehabilitation outcomes for adults with TBI; or
• Identification of interventions that demonstrate either efficacy, or effectiveness, or both, in promoting improved rehabilitation outcomes for children (under age 16) with TBI.

In addition, for either adults or children, the research funded under this priority must be designed to develop and evaluate improved techniques for assessing outcomes associated with TBI.

The reference for this topic can be found in the Plan, chapter 4, Health and Function: Research on Trauma Rehabilitation, p. 47.

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 the 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 potential costs associated with these proposed priorities are minimal while the benefits are significant. Grantees may anticipate costs associated with completing the application process in terms of staff time, copying, and mailing or delivery. The use of e-Application technology reduces mailing and copying costs significantly.

The benefits of the RRTC Program have been well established over the years. Similar projects have generated new knowledge and technologies.

The benefit of these proposed priorities will be the establishment of new RRTCs, which can be expected to generate new knowledge through research, dissemination, utilization, training, and technical assistance projects that will improve the lives of persons with disabilities and thus improve their ability to live in the community. 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 (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://www.gpoaccess.gov/nara/index.html .

(Catalog of Federal Domestic Assistance Number: 84.133B, Rehabilitation Research and Training Centers Program)

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