Disability and Health Team Ongoing Activities

In addition to in-house projects, the Disability and Health Team administers awards to state health departments, universities, and national organizations to:

	Implement disability and health programs for people with disabilities through state health departments and their university affiliates
	Promote health through interventions to reduce secondary conditions
	Study disability across the lifespan by: A) Assessing health status; B) Identifying risks and costs associated with secondary conditions and poor health; C) Developing, testing and evaluating health interventions; and D) Developing training for health professionals interested in the field of disability and public health
	Track disability prevalence and improvements in health status and quality of life for people with disabilities
	Support conferences to facilitate and stimulate the exchange of recent information about activities in the U.S. and abroad that address the health and well-being of people with disabilities; to establish research and policy priorities; and outline and undertake next steps.

Click on the MENU links below to quickly navigate this page and obtain descriptions of ongoing activities.
 

	PROJECT TITLE/TOPIC	GRANTEE or AGENCY
Implementing Disability and Health Programs
	Assisting State Disability Programs	American Association on Health and Disability, MD
	State Disability Programs	U. of Arkansas | California | U. of Illinois | Iowa | Massachusetts | U. of Montana | New Jersey | | New Mexico | | New York | North Carolina | Oregon | Rhode Island | U. of South Carolina | Vermont | Virginia | Washington
Promoting The Health of People with Disabilities
	Info Center: Paralysis Info Center: Limb Loss Info Center: Physical Activity Women's Health Campaign Youth Leadership Summit Healthy Athletes Special Smiles	Christopher Reeve Foundation, NJ Amputee Coalition of America, TN University of Illinois, Chicago Prospects Associates, MD U.S. Department of Education, DC Special Olympics, International Special Olympics, Georgia
Studying Disability Across the Lifespan
Assess Health Status	Osteoporosis among females	SUNY Upstate Medical Center, Syracuse
Identify Risks for Poor Health	Chronic conditions: people w/disability Co-morbidities: spinal cord injury or stroke Drug reactions: people w/disability Poor Environment: checklist Poor Environment: accessibility Poor Environment: barriers Poor Environment: children w/disabilities Poor Environment: fitness & recreation	University of South Carolina, Columbia Emory University, GA University of Iowa, Iowa City Washington University, St. Louis University of Washington, Seattle Craig Hospital, Colorado University of North Carolina, Chapel Hill University of Illinois, Chicago
Identify Cost of Poor Health	Cost of conditions: women w/disabilities Cost of conditions: adults w/DD	Baylor College of Medicine, TX University of Montana, Missoula
Evaluate the Cost of Interventions	Cost of physical activity intervention	University of Montana, Missoula
Studying Disability Across the Lifespan through ATPM/ASPH Universities
Assess Health Status	Cancer control Medicaid recipients Improving quality-of-life measures ICF integration: medical autocoding ICF compatibility: AAMR	Oregon Health and Science U., OR Saint Louis University, MO Columbia University, NY Boston University, MA
Identify Risks for Poor Health	Employment & health Social support: limb loss Social support: paralysis Social support: neural tube defects	Medstar Research Institute, DC University of Washington, WA University of Nevada, Reno Medical University South Carolina, SC
Develop, Test, and Evaluate Health Interventions	Stress intervention for women Cancer awareness campaign	Baylor College of Medicine, TX Duke University Medical Center, NC
Develop Public Health Training	Disability public health curriculum Disaster training in disability	Oregon Health and Science U., OR
Studying Disability Across the Lifespan through Directed Studies
	ICF health assessment: children Limb loss research & statistics	Courtesy Associates Inc, DC Johns Hopkins University, MD
Tracking Disability Prevalence and Improvements in Health Status of People with Disabilities
	Nat. Health Interview Survey HP2010 Behavioral Risk Factor Surveillance Assessing Health Plans, CAHPS® DataProbe®	National Center on Health Statistics, MD National Center on Chronic Disease and Health Promotion ,GA Agency Healthcare Research Quality, MD MEDSTAT Group, DC
Supporting Disability and Health Conferences
	2005 Conferences (1)

IMPLEMENTING DISABILITY PROGRAMS

Assisting State and Regional Disability Programs
Public Health Outcome: Strengthened state disability and health programs

CDC Contacts: Joe Smith, Mary Helen Witten
Project Period: Ongoing since 2002
Grantee: American Association on Health and Disability.

Project Description: The CDC Disability and Health Team provides support to the American Association on Health and Disability (AADH) located in Rockville, Maryland to assist states with (1) assessing current and future public health training needs; (2) developing effective public health programs that promote the health of people with disabilities; (3) shaping relationships with national disability organizations to launch multi-state collaborative health promotion interventions, and evaluation activities; and (4) widely distributing current scientific information about living better with a disability. The AADH/CDC state grantee meeting will be held August 25-27, 2003 in Baltimore, Maryland.

Collaborators: State health departments, universities, independent living centers, consumer groups, and other federal agencies and programs

PROMOTING THE HEALTH OF PEOPLE WITH DISABILITIES

 Paralysis Information and Resource Center
Public Health Outcome: Increased and consolidated education material on the prevention of secondary conditions and quality of life issues; and health resources such as referral services, peer support groups, and self-help guidance to people with paralysis, their families, and caregivers

CDC Contact: Juliana Cyril, Joe Smith
Project Period: Ongoing since 2001
Grantee: The Christopher Reeve Paralysis Foundation

Project Description: The CDC Disability and Health Team supports the Christopher and Dana Reeve Paralysis Resource Center, located in Short Hills, New Jersey. http://www.paralysis.org This national coordinating facility which officially opened in April 2002, is designed to provide educational materials on paralysis and the prevention of secondary conditions with an emphasis on improving the quality of life for people with paralysis. The center houses a staff of information specialists that can be reached at (800) 539-7309 and offers a library and website that provides a referral service and self-help guidance to individuals, their families, caregivers and health care providers.  In addition, the center maintains a Foundation Board that reviews and awards community-based health promotion grants twice a year. Although early in its operation, this new information and resource center has already:

• Gathered demographic and statistical research with a focus on the prevalence, causes, and extent of secondary conditions;

• Facilitated health promotion activities among people with paralysis addressing primarily physical activity and exercise, nutrition, depression/isolation issues, weight management, and tobacco cessation to enhance physical and emotional health.

• Provided outreach to youth, older adults, men and women, and ethnic minorities with paralysis; and

• Developed a collaborative national relationship with rehabilitation facilities, hospitals, and disability advocacy and voluntary support groups;

Collaborators: Amyotrophic Lateral Sclerosis Association, American Association of People with Disabilities, American Stroke Association, National Council on Independent Living, National Family Caregivers Association, The National Multiple Sclerosis Society, Paralyzed Veterans of America, Spina Bifida Association of America, United Cerebral Palsy, and the CDC State and University Grantees

Related CDC Disability and Health Team Activities:  
The CDC Disability and Health team is working with state grantees to increase their number of referrals to the Paralysis Resource Center. In addition to the National Paralysis Resource Center, the Disability and Health Team supports two studies on the protective role of social supports for people experiencing paralysis. The awards were made to the Medical University of South Carolina and the University of Nevada at Reno and these projects are fully described later on this Web page.

 Limb Loss Information Center
Public Health Outcome: Increased education materials, referral services, self-help guidance, peer counseling programs, youth initiatives, and targeted national outreach for people with limb loss, their families, and caregivers

CDC Contact: John Crews, Joe Smith
Project Period: Ongoing since1999
Grantee: The Amputee Coalition of America

Project Description: The CDC Disability and Health Team supports the National Limb Loss information Center. This center is run by the Amputee Coalition of America in Knoxville, Tennessee. The center was established to provide a source of national and  centralized comprehensive limb loss information and referral, publications, prosthetic resources, and peer support. The center maintains a large consumer database to determine the prevalence of limb loss among children and adults and a database of literature and referral sources. The center also offers peer support groups, a national magazine for consumers, family members, and providers and a interactive Website http://www.amputee-coalition.org/nllic_about.html. Each year, the center conducts an annual educational conference. In July 2002, the largest limb loss gathering to date was convened in Anaheim, California. Over 700 attendees met to address such issues as prosthetic and orthodic care, peer counseling and outreach, youth initiatives for young people with amputations, and medical/surgical topics including amputation surgery, phantom pain, and rehabilitation.

Collaborators: Johns Hopkins University, School of Public Health
 

 National Information Center on Physical Activity and Disability
Public Health Outcome: Consolidated and cutting-edge national resources on physical activity for people with disabling conditions to prevent secondary conditions such as overweight, heart disease, and diabetes 

CDC Contact: John Crews, Joe Smith
Project Period: Ongoing since 1999
Grantee: University of Illinois at Chicago, Department of Disability and Human Development

Project Description: The CDC Disability and Health Team supports the National Center on Physical Activity and Disability (NCPAD), a clearinghouse for research and practice information to promote healthy lifestyles for people with disabilities. This national center gathers, organizes, and synthesizes information related to fitness, physical activity, and disability. The center maintains an active Website http://www.ncpad.org that hosts a searchable database of information regarding all aspects of physical activity and disability. The website also hosts a search engine that allows visitors to find fact sheets, books, videos, and bibliographies on topics related to specific disabilities and physical activity, as well as important organizations and agencies. The center has a toll free line (voice and TTY) that allows callers to receive individualized information and referrals from specialists who can research specific requests, provide materials in many topic areas, and refer complex questions to an expert panel. In addition, the Assistive Technology Unit provides assistance with determining whether a fitness facility is accessible; modifying commercial recreational and exercise equipment; and finding solutions that can match a person's gender, age, specific condition, and interest or ability, with the exercise task he or she is trying to perform. As the only source in the U.S., the center also provides very centralized and specialized information on physical, sensory, and mental disabilities.  To subscribe to a free electronic monthly newsletter, send an e-mail to Listserv@listserv.uic.edu and type the following message in the body of the e-mail: SUBSCRIBE NCPAD-NEWS your first name your last name then click send.

Collaborators: Rehabilitation Institute of Chicago and National Center on Accessibility at the University of Indiana
 

 Women’s Health Education Campaign
Public Health Outcome: Improved health for women with disabilities

CDC Contacts: JoAnn Thierry, Juliana Cyril
Project Period: 2002-2003
Contractor: Prospects Associates, MD

Project Description:  The CDC Disability and Health Team is developing a women's health education campaign under contract with Prospects Associates located within the American Institutes for Research. The primary emphasis of this project is to create effective health messages and materials for women with disabilities. The contractors are: (1) identifying  health goals, messages, and concepts; (2) identifying and selecting appropriate communication channels; (3) creating campaign materials and pre-testing them to determine if women with disabilities are receptive to the messages and materials; and (4) developing a plan to share the communication materials with other groups who have contact with women with disabilities. Campaign materials are scheduled to be completed in September 2003. The final products will be shared with the disability and health state programs to further health education campaigns.

Collaborators:  CDC Office of Communications
 

 Youth Leadership Summit
Public Health Outcome: Increased number of youth with disabilities who have training to become national leaders

CDC Contact: Juliana Cyril
Project Period: 2002
Co-agency: Office of Special Education and Rehabilitative Services at the U.S.  Department of Education.

Project Description: The CDC Disability and Health Team supported the National Youth Leadership Network's, Youth with Disabilities Leadership Summit held July 18-22, 2002, in Washington, DC.  http://www.nyln.org/index.php The summit provided information to youth with disabilities concerning national disability policy, public policy leaders, disability and health issues, work opportunities, and job- related programs available to them, and identified barriers to economic independence as seen by youth.  Summit goals included identifying youth policy priorities and creating a national agenda; promoting the leadership skills and strengthening networks of participants; training a team of young leaders with disabilities to advance and assist with disability opportunities and policies in their states and communities. In addition to support for youth leadership activities, the CDC Disability and Health Team regularly participates in annual National Disability Awareness Month events such as the National Disability Mentoring Day held in October.

Collaborators: The National Youth Leadership Development Network Project at the Oregon Health and Science University.

 Healthy Athletes
Public Health Outcome: Improved health of athletes with mental retardation and other disabilities

CDC Contacts: Vince Campbell, Mary Helen Witten
Project Period: 2002-2007
Grantee: Special Olympics, International 

Project Description: Under special Congressional funding, the CDC Disability and Health Team provides support for the Healthy Athletes Program hosted by Special Olympics International http://www.specialolympics.org to promote the health of athletes with disabilities. Funding for the Healthy Athletes Program helps expand on-site health screening and clinical services, and various other supports to over 360,000 athletes with disabilities who participate in the 26 sporting events. In addition to funding, the CDC Disability and Health Team attended the 2002 Special Olympics Healthy Athletes Global Leadership and Development Conference and Medical Advisory Committee meeting held in Rosslyn, VA, to prepare for the upcoming games and the Team will collaborate in the analysis of health-screening data obtained during the Special Olympics Summer Games in Ireland, June 2003.

 Special Smiles
Public Health Outcome: Improved health of athletes with mental retardation and other disabilities in Georgia

CDC Contacts: Vince Campbell, Mary Helen Witten
Project Period: Ongoing since 1995
Grantee: Special Olympics, Georgia  

Project Description: The CDC Disability and Health team provides supports to the Georgia Special Olympics, Special Smiles Program to improve the health of athletes with disabilities through on-site oral health screening during the games. The first oral health screenings took place during the 1995 summer games at Emory University. This year, the games will be held in Gainesville, Georgia on October 17-19, 2003. Information about Special Smiles can be found at  http://www.specialolympicsga.org

STUDYING DISABILITY ACROSS THE LIFESPAN

The CDC Disability and Health Team currently supports 12 research projects funded under Program Announcement 00073 to: Assess the health status and quality of life for people with disabilities; Identify risk factors and costs associated with secondary conditions and poor health; and Develop, test, and evaluate health promotion interventions to reduce secondary conditions.

 Identifying Osteoporosis Among Women and Girls With Disabilities
Public Health Outcome: Improved health assessment among women with disabilities

CDC Contact: Joann Thierry, Mary Helen Witten
Project Period: 2001-2003
Grantee: Margaret Turk, State University New York, Upstate Medical University, Department of Physical Medicine and Rehabilitation. Telephone: 315/464-5820. E-mail: turkm@upstate.edu 

Project Description: Investigators at the Research Foundation of State University of New York are conducting a 2-year study to estimate how wide-spread osteoporosis is among women and girls with mobility impairment.  The investigators are using a technique called Dual Energy X-ray Absorptiometry (DEXA), to measure bone mineral density and calcium content. This technique is described at http://www.aiclancaster.com/p_dexa.htm. While DEXA is known to be safe and accurate in the general population, it does not produce accurate calcium and bone density measurements among women and girls who have "contractures" also known as bent and stiff joints. During pilot testing, investigators at the Research Foundation determined that a 30˚ flexion contracture can cause a DEXA bone density reading to be miscalculated by as much as 50%. The investigators' literature review to date suggests that the lower outer thigh offers the most precise site for DEXA bone density readings on women and girls with cerebral palsy. Ultimately, this research will (1) contribute to the literature on the use of DEXA scans among people with mobility limitations, and (2) produce a new protocol and adjusted equation for calculating accurate DEXA measurements for women and girls with contractures and mobility impairment. 

 Patterns of Onset and Course of Chronic or Secondary Conditions among People with Disabilities
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: Mary Helen Witten
Project Period: 2001-2003
Grantee: Suzanne McDermott, University of South Carolina. Telephone: 803/434-2445. E-mail: suzanne.mcdermott@palmettohealth.org 

Project Description: Investigators at the University of South Carolina in Columbia are attempting to identify the pattern of onset and course (natural history) of selected secondary conditions associated with learning, mobility, behavioral disabilities, and multiple disabilities. The investigators are examining risk factors for conditions such as cardiovascular disease, diabetes, high blood pressure, obesity, secondary limb loss, depression, anxiety, and alcohol or drug use. The information gained from this study will enhance health promotion efforts among people with disabilities.

 Co-morbidities Among People With Spinal Cord Injury and Stroke
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: Mary Helen Witten
Project Period: 2001-2003
Grantee: Victoria Phillips, Emory University, Rollins School of Public Health. Telephone: 404/727-9974. E-mail: vphil01@sph.emory.edu  

Project Description: Staff at Emory University and the Shepherd Center in Atlanta are working together to identify patterns of onset and the course (natural history) of conditions among people who have had a spinal cord injury or stroke. The investigators are collecting data on secondary conditions, including depression, fatigue and episodes of muscle spasm, pain levels, handicap level, pressure sores, and urinary tract infections. Additional data will be gathered on health-care use and health behaviors such as smoking.  

 Assessing Risk Factors for Adverse Drug Reactions Among People With Disabilities
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: Joe Smith
Project Period: 2001-2003
Grantee: Elizabeth Chrischilles, University of Iowa. Telephone: 319/335-9626. E-mail: e-chrischilles@uiowa.edu  

Project Description: University of Iowa investigators are evaluating risk factors for adverse drug reactions among older people and people with disabilities enrolled in Medicare. Specifically, they are examining medications, degree of mobility impairment, and access to care as risk factors. This study on the determinants of well-being will assist service delivery systems with preventing drug reactions among people with disabilities.

 Developing A Community Health Environment Checklist
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: John Crews, Joe Smith
Project Period: 2001-2003
Grantee: David Gray, Washington University. Telephone: 314/286-1658. E-mail: Dgray@ot-link.wustl.edu

Project Description: Investigators at Washington University in St. Louis, Missouri and the Paraquad Independent Living Center aim to develop a set of objective, reliable, and valid measures of the physical, social, and cultural environments that affect the participation of people with disabilities in everyday community life, particularly those with mobility limitations. The measures will provide a Community Health Environment Checklist that can be used by people with disabilities, health professionals, employers, recreational site planners, telecommunication operators, transportation providers, and commercial establishment owners to assess specific barriers to and facilitators of participating in everyday community life. This research will help guide the "next steps" towards reducing community inaccessibility, a risk factor for poor health and well-being among people with disabilities.

 Measuring Community Accessibility in Two Washington State Communities
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: Donald Lollar, Joe Smith
Project Period: 2001-2003
Grantee: Susan Kinne, University of Washington. Phone: 206/685-4769. E-mail: susaki@u.washington.edu  

Project Description: Investigators at the University of Washington in Seattle are developing and testing measurement instruments that identify and assess important community factors that affect physical and social accessibility for people with disabilities in community environments. In partnership with their local health districts, the investigators are collecting data on individual needs and environmental aspects from neighborhoods in Seattle and Spokane. This project highlight the importance of meaningful participation in the community by people with disabilities and will ultimately lead to community interventions that increase access and participation.

 Measuring Environmental Barriers in Colorado: Craig Hospital Inventory of Environmental Factors (CHIEF)
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: Joe Smith
Project Period: 2001-2003
Grantee: Gale Whiteneck, Craig Hospital. Telephone: 303/789-8204. E-mail: gale@craighosPital.org

Project Description: Investigators at Craig Hospital in Colorado recently developed and validated a survey instrument, the Craig Hospital Inventory of Environmental Factors (CHIEF), designed to assess the frequency and magnitude of perceived physical, attitudinal, and policy barriers that keep people with disabilities from doing what they want or need to do. To date, the data demonstrate frequent and problematic environmental barriers encountered by people with disabilities encounter. Moreover, CHIEF demonstrates that the the type and severity of the disability is associated with the impact of barriers encountered in the environment. The investigators are furthering their study of environmental factors affecting health using three distinct tools: a community characteristics checklist of physical/structural aspects of the environment, a survey of attitudes toward disability expressed by community members, and a service use and outcomes discrepancy analysis comparing service use and outcome achievement data between people with and without disability in a community. 

 Measuring The Environment of Children And Youth With Disabilities
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: John Crews, Mary Helen Witten
Project Period: 2001-2003
Grantee: Rune Simeonsson, University of North Carolina. Phone: 919/966-6634. E-mail: rune_simeonsson@unc.edu  

Project Description: Investigators from University of North Carolina in Chapel Hill, Gallaudet University in Washington DC, and the Center for Discovery in New York are developing a measurement instrument to assess environmental factors affecting children and youth with disabilities in their communities.  The conceptual and taxonomic framework of the International Classification of Functioning, Disability and Health (ICF), serves as the basis for defining and documenting environmental factors that affect functioning and secondary conditions of children and youth with disabilities. The study will yield a set of sound and efficient measures of the environment that will be disseminated widely for use in public health monitoring, intervention, and evaluation efforts.

 Developing Accessibility Instruments That Measure Fitness and Recreation Environments (Project AIMFREE)
Public Health Outcome: Identified risk factors for secondary conditions among people with disabilities

CDC Contact: Donald Lollar, Joe Smith
Project Period: 2001-2003
Grantee: James Rimmer, University of Illinois. Telephone: 312/413-9651. E-mail: jrimmer@uic.edu

Project Description: Through an arrangement with the existing network of Disability and Business Technical Assistance Centers (DBTACs), investigators at the University of Illinois, Chicago are developing two standardized instruments to measure the physical and social accessibility of community recreation and fitness centers, including parks, pools, trails, schools, and other health facilities. The first instrument is designed for use by people with disabilities or by professionals e.g., fitness trainers, owners of fitness centers, city and park district managers), to assess the accessibility or 'disability friendliness" of the built environment, fitness programs, equipment, fitness staff, systems, and policies. The second instrument measures barriers and facilitators to fitness and recreation center participation as perceived by people with disabilities. The 2001 International Classification of Functioning, Disability, and Health (ICF) will provide the conceptual framework for identifying and evaluating various environmental factors, including physical, social, and attitudinal elements. This effort to clarify the role of environmental factors in enabling people with mobility impairments to make use of and participate in fitness and recreation centers and programs is of special health significance as people with disabilities are at greater risk of developing secondary conditions due to inactivity and sedentary lifestyles.

 Analyzing the Cost of Depression and Other Secondary Conditions in Women With Disabilities
Public Health Outcome: Identified costs of secondary conditions among people with disabilities

CDC Contact: Joann Thierry, Mary Helen Witten
Project Period: 2001-2003
Grantee: Margaret Nosek, Baylor College of Medicine. Telephone: 713/960-0505. E-mail: mnosek@bcm.tmc.edu  

Project Description: Scientists at Baylor College of Medicine in Houston are examining the cost of secondary conditions, especially depression, among women with physical disabilities. The study objectives are to assess the disability characteristics, including impairment, activity, and participation using the World Heath Organization ICF Model; determine the incidence of depression and other secondary conditions over one year; and identify the direct medical and non-medical, and indirect costs of depression and other secondary conditions among women enrolled in the study.  Findings from the study will have implications for clinical practice in primary medicine and rehabilitation, and for public health practice and policy that governs the availability and delivery of mental health services to people with disabilities.

 Assessing Costs Associated With Secondary Conditions in Adults With Developmental Disabilities
Public Health Outcome: Identified costs of secondary conditions among people with disabilities

CDC Contact: Mary Helen Witten
Project Period: 2001-2003
Grantee: Tom Seekins, University of Montana. Telephone: 406/243-2654. E-mail: tseekins@selway.umt.edu

Project Description: Researchers at the University of Montana in Missoula are developing and testing methods and measures for assessing costs associated with secondary conditions among adults with developmental disabilities living in supported systems. This study will also design and evaluate a template for conducting cost-effective environmental interventions aimed at reducing limitation due to secondary conditions.

 Evaluating The Cost of A Physical Activity Intervention for Medicaid Beneficiaries With Mobility Impairments
Public Health Outcome: Identified costs of health promotion interventions to prevent secondary conditions among people with disabilities

CDC Contact: Mary Helen Witten
Project Period: 2001-2003
Grantee: Craig Ravesloot, University of Montana. Telephone: 406/243-2447. E-mail: cravesloot@selway.umt.edu

Project Description: Investigators at the University of Montana in Missoula are investigating the cost-effectiveness of physical activity interventions among Medicaid beneficiaries who report mobility impairment from chronic illness and permanent injuries. This research tests varying recruitment and treatment methods in an experimental design and assesses the cost of achieving specific physical fitness outcomes within various stages of change. One study goal is to assess how an individual's perceived limitations and barriers influence their participation in health promotion and physical fitness programs.  A second study goal is to assess the cost-effectiveness of providing physical activity services to Medicaid beneficiaries who have mobility impairment.  A third study goal is to assess the reliability of self-reported healthcare use in the context of a physical activity program.

STUDYING DISABILITY ACROSS THE LIFESPAN 
(through the Association of Teachers of Preventive Medicine (ATPM) and the Association of Schools of Public Health (ASPH)

The Disability and Health Team currently supports 12 ongoing ATPM/ASPH Research and Training Grants to: Assess the health status and quality of life for people with disabilities; Identify risk factors and costs associated with secondary conditions and poor health; Develop, test, and evaluate health promotion interventions to reduce secondary conditions; and Develop public health training.

 Assessing Cancer Control in the Oregon Medicaid Population
Public Health Outcome: Improved health assessment for people with disabilities

CDC Contact: Donald Lollar, Joe Smith
Project Period:  2000-2002
Grantee: Donald Austin, Oregon Health and Science University. Telephone:
E-mail: Austind@ohsu.edu

Project Description: Scientists at the Oregon Health and Science University in Portland are assessing cancer service use and outcomes among the Oregon Medicaid population focusing on clients with various types and severities of disabilities. During the first study phase, investigators are establishing whether people with disabilities are at higher risk for any particular cancer and late diagnosis or poor treatment.  In the second phase, the investigators are identifying reasons why medically proven cancer control strategies fail in Medicaid patients with disabilities. In the third phase, the investigators are developing recommended remedies for cancer care and identifying prevention problems. One major study goal is to describe policies and procedures that will result in lower risk for cancer among people with disabilities in the Oregon Medicaid population.

 Improving Quality of Life Measures For People With Disabilities
Public Health Outcome: Improved health assessment for people with disabilities

CDC Contact: Donald Lollar
Project Period: 2001-2002
Grantee: Elena Andresen, Saint Louis University. Telephone: 314/977-8130. E-mail: Andresen@slu.edu

Project Description: Investigators at Saint Louis University, Missouri are conducting a study to improve the way scientists measure quality of life for people with disabilities compared to people in the general population. Currently, quality of life (QALY) measures incorporate individual preferences for particular health states and people with disabilities have different preferences than the general population which affects the accuracy of scientific QALY measures. The investigators are testing various health/impairment scenarios in people with and without disabilities then comparing and weighting their health preferences. Then using the weighted preferences, the investigators are deriving a “correction factor” that can be applied to the standard QALY measures. This research will contribute to better planning and impact assessment of health care among people with disabilities.

 Integrating The International Classification of Functioning, Disability, and Health Into An Existing Automated Medical Coding System
Public Health Outcome: Improved health assessment for people with disabilities

CDC Contact: Juliana Cyril
Project Period: 2002-2004
Grantee: Rita Kukafka, Columbia University School of Public Health, NY. Telephone: 212/305-9193. E-mail: rita.kukafka@dmi.columbia.edu

Project Description: Investigators at Columbia University School of Public Health in New York are exploring ways to integrate two health coding systems -- An automated medical coding system and the International Classification of Functioning, Disability, and Health (ICF). The ICF adds information about person's health behavior, emotional, environmental, and social attributes.

 Examining the Compatibility of The International Classification of Functioning, Disability, and Health with the American Association of Mental Retardation
Public Health Outcome: Improved health assessment for people with disabilities

Project Period: 2002-2004
Grantee: Mary Cerreto, Boston University Medical Center. Telephone: 508/653-9165. E-mail: mcerreto@aol.com

Project Description: Researchers at the Boston University Medical Center in Massachusetts are examining the theoretical and applied compatibility of two distinct disability systems of classification, functioning, and environmental assessment -- the 2002 American Association of Mental Retardation (AAMR) and the 2001 World Health Organization International Classification of Functioning, Disability, and Health (ICF). This study will compare diagnostic definitions and practical application of both the ICF and AAMR in their ability to describe behavior, needed environmental changes and supports to prevent secondary conditions among people with mental retardation. Anticipated published findings are expected to improve guiding practices in the field of mental retardation and health.

 Examining The Impact of Employment on Health Outcomes for Adults With Disabilities
Public Health Outcome: Identified risk factors for poor health and well-being among people with disabilities

CDC Contact: Don Lollar
Project Period: 2001-2003
Grantee: Gwyn Jones, MedStar Research Institute. Telephone: 202/466-1916, E-mail: gwyn.c.jones@medstar.net

Project Description: Investigators at MedStar Research Institute in Washington DC are investigating the possible protective relationship between employment status and the occurrence of secondary conditions among working-age adults with disabilities using data from the 1997-98 National Health Interview Survey and the 1996 Medical Expenditure Panel Survey. The researchers are: (1) examining employment disparities between adults ages 18-64 with and without disabilities as identified in HP2010 Objective 6-8; (2) examining the occurrence of secondary conditions among working-age adults with disabilities by employment status; (3) investigating direct and indirect benefits of employment and their relationship to secondary conditions; and (4) investigating the prevalence of health risk factors and their relationship to reported secondary conditions for employed and unemployed working-age adults with disabilities.

 Identifying Models of Social Support Among People With Limb Loss
Public Health Outcome: Identified risk factors for poor health and well-being among people with disabilities

CDC Contact: John Crews, Joe Smith
Project Period:  2001-2002
Grantee: Dawn Ehde, University of Washington School of Medicine. Telephone: 206/731-2811. E-mail: ehde@u.washington.edu  

Project Description: Investigators at the University of Washington School of Medicine in Seattle are identifying models of social support that may lead to positive physical and psychological outcomes in people who have experienced limb loss. The study aims are: (1) to extend the understanding of the nature of social support, including networks support, supportive behaviors, and perceived support in adults recently experiencing limb loss; (2) to identify methods of interventions individuals pursue, if any, to obtain or utilize social support following limb loss, including efforts at bolstering support from naturally occurring networks (family, friends), health care professionals, peers (support groups); and (3) to test hypotheses derived from a biopsychosocial model concerning the association between amputation-related variables, social support, coping strategies, and adjustment to limb loss (physical and psychological). This study will increase the scientific and theoretical understanding about the nature of social support following amputation, as well as its association with health outcomes (favorable and unfavorable). Findings from this study will help develop future public health interventions, including prevention strategies that enhance social support and health outcomes among people experiencing limb loss. This study directly addresses HP2010 Objective 6-5 that seeks to increase emotional support among adults with disabilities.

 Examining Social Support Among People With Paralysis
Public Health Outcome: Identified risk factors for poor health and well-being among people with disabilities

CDC Contact: Joe Smith
Project Period:  2001-2003
Grantee: Charles Bullock, University of Nevada. Telephone: 775/784-4041. E-mail: cbullock@unv.edu

Project Description: Researchers at the University of Nevada in Reno are attempting to identify (1) predictors of perceived emotional support among people with paralysis; (2) mediators for links between actual and perceived support; and (3) high functioning individuals who are able to maintain sufficient social support and individuals who are able to adjust despite a lack of social support. Researchers will examine perceived emotional support, type of social support received (emotional, financial, informational), disability impact in psychosocial and physical dimensions, relevant demographic variables, and comparisons between a higher functioning study group and those with less adjustment and social support. The outcomes associated with this study include, designing interventions that increase social support in people with paralysis; describing the key elements of high-functioning individuals that increase social support and coping strategies; and identifying the specific variables that predict perceived emotional support in people with paralysis. This study directly addresses HP2010 Objective 6-5 that seeks to increase emotional support among adults with disabilities.

 Examining Social Support Among Youth with Paralysis Secondary to Neural Tube Defects
Public Health Outcome: Identified risk factors for poor health and well-being among people with disabilities

CDC Contact: Mary Helen Witten
Project Period:  2001-2003
Grantee: Michelle Macias, Medical University South Carolina. Telephone: 843/876-1516. E-mail: Maciasm@musch.edu

Project Description: Investigators at Medical University South Carolina in Charleston are identifying and mobilizing protective and preventive factors including social supports to prevent secondary conditions related to paralysis among youth with neural tube defects (NTDs). The investigators are identifying (1) the relative contributions of demographic variables, biological/medical factors, experience of stress and trauma, and social support in the health outcomes (cognitive development, social competence, emotional/behavioral health, and physical health) among youth with paralysis; (2) the specific contributions of the fathers’ demographic status, the presence of stressors, and social support to the health outcomes; and (3) the specific contributions of the youths’ personal social supports, trauma exposure, participation in recreation, and opportunities for inclusion. The ultimate goal of this interdisciplinary research is to develop, implement and evaluate replicable models of intervention that minimize poor health outcomes for youth and adults with paralysis associated with NTDs. 

 Managing Stress, An Intervention for Women With Disabilities
Public Health Outcome: Effective health promotion interventions for people with disabilities

CDC Contact: Joann Thierry
Project Period: 2002-2003
Grantee: Rosemary Hughes, Baylor College of Medicine. Telephone: 713/960-0505. E-mail: rhughes@bcm.tmc.edu

Project Description: Researchers at the Baylor College of Medicine in Houston, Texas are examining ways to promote health and prevent secondary conditions among women with physical disabilities who might be at increased risk for stress. The project aims are to develop and test the efficacy of an innovative, theory-driven group intervention designed to enhance self-efficacy (confidence in one's ability to take action), social connectedness, and healthy behaviors, and to examine the roles of those beliefs and behaviors in improving health outcomes. Researchers are examining the relative effectiveness of a peer-facilitated stress self-management workshop compared with the peer-facilitated support group in enhancing self-efficacy, social connectedness, and healthy behaviors, and the effect of these three factors in mediating or predicting health outcomes in the study population. This study is designed to aid clinical rehabilitation and mental health practice and public health policy governing mental health services for women with disabilities.

 Developing A Cancer Screening Awareness Campaign: Count Us In
Public Health Outcome: Effective health promotion interventions for people with disabilities

CDC Contact: Joann Thierry
Project Period: 2001-2003
Grantee: Susan Epstein, Duke University Medical Center. Telephone: 919/681-3187. E-mail: epste003@mc.duke.edu

Project Description: Investigators at Duke University Medical Center in Durham, NC, the North Carolina Office on Disability and Health, the North Carolina Department of Public Health, and the Medical Review of North Carolina are developing a comprehensive health education campaign to increase public awareness of breast and cervical cancer screening for women with disabilities. The campaign will reach women with disabilities, healthcare providers, lay health advisors, and community health leaders. In addition to he campaign, training on the needs of women with disabilities and how to appropriately screen them for cancer will be incorporated into the professional curricula at Duke University. The investigators are examining Medicare claims data to measure pre- and post-training and campaign changes in cancer screening among women with disabilities.

 Implementing And Testing a Disability And Public Health Curriculum
Public Health Outcome: Available public health training across the lifespan in the field of disability and health

CDC Contact: Donald Lollar, Joe Smith
Project Period: 2000-2002
Grantee: Charles Drum, Oregon Health and Science University. Telephone: 503/494-8047. E-mail: drumc@ohsu.edu

Project Description: Investigators at the Oregon Health and Science University in Portland, the Oregon Office on Disability and Health, and the Center on Self-Determination are collaborating to develop a disability and public health curriculum. The aim is to develop, test, evaluate, and revise a manual and instructors guide that teaches contemporary public health perspectives and disability topics to students; and to establish a plan to disseminate this curriculum to schools of public health. This project will enhance the public health curricula offered in schools of public health and medicine by adding a disability topical curriculum.

 Disaster Response Training to Assist People with Disabilities
Public Health Outcome: Available public health training across the lifespan in the field of disability and health

CDC Contact: Larry Burt
Project Period: 2002-2005
Grantee: Glen White, University of Kansas Center for Research, Lawrence. Telephone: 785/864-4095. E-mail: glen@ku.edu 

Project Description: will be posted soon

STUDYING DISABILITY ACROSS THE LIFESPAN
through directed studies

 Expanding The International Classification of Functioning, Disability, and Health for Children
Public Health Outcome: Improved health assessment for children with disabilities

CDC Contact: Donald Lollar
Project Period:  2002-2003
Contractor: Courtesy Associates, Washington, DC
Collaborators: Dr. Rune J. Simeonsson simeonsr@mail.fpg.unc.edu at the Frank Porter Graham Center; Dr. Bjorck-Akesson at Malardalen University; and   
Drs. Leonardi and Ustunm, ustunb@who.int at the World Health Organization.

Project Description: The CDC Disability and Health Team contracted with Courtesy Associates in Washington DC, to oversee work with the World Health Organization to standardize health status assessments for children using the International Classification of Functioning, Disability, and Health (ICF) framework. In September 2002, the children's ICF workgroup met in Vasteras, Sweden. Researchers spent several intense days directly examining the ICF to identify content that needed to be modified and added for children.  Researchers also met with representatives of Swedish practitioners, policy makers and researchers to exchange information about ongoing disability research around the world. The children's ICF workgroup drafted children's material for the ICF and in October 2002, the children’s ICF workgroup met at the ICD-ICF meeting in Brisbane, Australia to review the work and seek consultation on next steps. Drs. Leonardi and Simeonsson presented at the Brisbane meeting and sent the CDC Disability and Health Team a copy of the drafted ICF material and a report that summarizes the Brisbane meeting.  Field evaluations of the children's ICF material began in January 2003. The goal is to complete the children's ICF material by the end of 2003.

 Limb Loss Research and Statistics
Public Health Outcome: Improved health of people with limb loss through public health research and effective public policies

CDC Contacts: Juliana Cyril, Mary Helen Witten
Project Period: 2002-2003
Grantee: Ellen MacKenzie, Johns Hopkins University School of Public Health. Telephone: 410/614-4025. E-mail: emackenz@jhsph.edu
Collaborators: Amputee Coalition of America http://www.amputee-coalition.org/llrsp/index.html

Project Description: Researchers at Johns Hopkins University School of Public Health are examining multiple data sets to determine the occurrence of limb loss among children and adults. The investigators are identifying the magnitude of limb loss and limb reduction, assessing risk factors, determining the cost-effectiveness of interventions, identifying outcomes, and disseminating study results to ensure that research findings are appropriately translated into effective programs and public policy. To date, the researchers have developed the first large-scale estimate of the occurrence of limb loss in the U.S. population. 

MONITORING DISABILITY PREVALENCE AND THE HEALTH STATUS OF PEOPLE WITH DISABILITIES

 National Health Interview Survey, HP2010 Supplement
Public Health Outcome: Measured progress in improving the health status and quality of life of people with disabilities; and identified health risks that lend themselves to public health interventions

CDC Contacts: Don Lollar, Lisa Sinclair, Vince Campbell
Project Period: 2002-2003
Co-Agency: National Center on Health Statistics, CDC
Collaborators: U.S. Department of Education; U.S. Department of Commerce  

Project Description: The CDC Disability and Health Team currently supports 18 questions in the 2002 NHIS. These new survey questions are designed to collect data for HP2010 Chapter 6 objectives for which no data source existed. To view the 18 questions, go to http:///www.cdc.gov/nchs/nhis.htm and scroll down to the 2002 NHIS then click on survey questions. Data are not likely to be available before 2004.

Future CDC Plans: Assess occurrence of selected HP2010 Leading Health Indicators among people with disabilities (e.g., use of tobacco, obesity, use of alcohol). Continue to work closely with the National Centers for Health Statistics and other survey designers to refine questions used to identify people with disabilities in various state and national surveys.

 State Behavioral Risk Factor Surveillance System
Public Health Outcome: Measured progress in improving the health status and quality of life of people with disabilities; and identified health risks that lend themselves to public health interventions

CDC Contact: Vince Campbell
Project Period: Annual
Co-Agency: National Center on Chronic Disease Prevention and Health Promotion, CDC
Collaborators: State Health Departments and Territories, University of Arkansas, University of Illinois, University of Montana, University of South Carolina, University of Washington, and University of North Carolina.

Project Description: In 2003, The CDC Disability and Health Team added two disability questions to the core section of the annual Behavioral Risk Factor Surveillance System. These questions will, for the first time, enable all 50 states, territories and the District of Columbia to (1) identify people with disabilities who participate in the survey, (2) describe the health status of people with disabilities living within their state, and (3) examine health risk behaviors. The Disability and Health Team will continue to monitor state-specific disability prevalence and assess the occurrence of selected HP2010 Leading Health Indicators among people with disabilities (e.g., use of tobacco or alcohol). The Team will also continue to work closely with the National Centers for Health Statistics and other survey designers to evaluate and refine questions used to identify people with disabilities in various state and national surveys.

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SUPPORTING DISABILITY AND HEALTH CONFERENCES

2005, January 24-25. Beyond Assessment: Prevention Interventions for Overweight and Obesity Among Children with Developmental Disabilities. Conference will be held the Radisson Hotel, West Los Angeles, California.

For more information, contact Cary Kreutzer at the University of Southern California, University Center for Excellence in DDs, Children's Hospital.
Phone: 323.671.3830.

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This page was last updated August 26, 2004

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National Center on Birth Defects and Developmental Disabilities

The National Center on Birth Defects and Developmental Disabilities (NCBDDD) promotes the health of babies, children, and adults, and enhances the potential for full, productive living.  Our work includes identifying the causes of birth defects and developmental disabilities, helping children to develop and reach their full potential, and promoting health and well-being among people of all ages with disabilities.