Abbreviated Vita

KAREN J. LUKEN ABBREVIATED VITA

Degrees Earned MSRA(Recreation Administration), with a concentration in therapeutic recreation, University of North Carolina at Chapel Hill, 1988 B.S. Leisure Studies, with an emphasis in therapeutic recreation, University of Illinois at Champaign-Urbana, 1979 Certificate in Public Health, School of Public Health, UNC-CH, 2004.

Professional Experience Project Director, NC Office on Disability and Health, FPG Child Development Institute, University of North Carolina at Chapel Hill, 2002-present. Programmatic and administrative leadership for health promotions initiatives, budget management, staff supervision, technical assistance, evaluation, and collaboration with grant partners, including NC Division of Public Health, disability and health service and advocacy organizations, and universities and community colleges. Associate Director, Center for Recreation and Disability Studies, Dept. of Recreation and Leisure Studies, University of North Carolina at Chapel Hill, 1999 - 2002. Management of grant and contract projects, acquisition of external funding, dissemination of project findings, staff hiring, training, and supervision, liaison with project partners, and academic course instruction. Project Coordinator, Center for Recreation and Disability Studies, Dept. of Recreation and Leisure Studies, University of North Carolina at Chapel Hill, 1991 - 1999. Oversight of federal, state, and county demonstration grants and contracts addressing social inclusion needs of persons with disabilities. Instructor, Dept. of Recreation and Leisure Studies, UNC-CH, 1989- 2002. “Clinical Skills in Therapeutic Recreation, Disabling Conditions”, “The Practice of T.R., Issues and Trends in T.R.”, and “Principles and Procedures in T.R.”. Therapeutic Recreation Specialist II, University of North Carolina Hospitals, Chapel Hill, 1981- 1990. Direct service provision to adults and adolescents in acute care psychiatric unit and out- patient Eating Disorders Clinic. Rehabilitation Therapist, Orange-Person-Chatham Area Program, 1980-81. Direct service to adults with serious mental illness receiving services in a community-based adult psychiatric treatment program. Rehabilitation Technician, Daniel Drake Hospital, Cincinnati, Ohio, 1974-1977. Direct service for adults with physical rehabilitation needs.

Publications (2006-2013)

Swaine, J.G., Parish, S.L., Subharati Ghosh, Luken, K. & Wright, G. (2013). Obtaining medical records for women with developmental disabilities in a community-based health promotion intervention. Journal of Policy and Practice in Intellectual Disabilities. Volume 10, Issue 1, pages 54–61.

Parish, S.L., Swaine, J.G., Dababnah, S., & Luken, K. (2013). Family Caregivers’ Perspectives on Barriers and Facilitators of Cervical and Breast Cancer Screening for Women with Intellectual Disabilities. Journal of Intellectual and Developmental Disabilities, vol. 51, no. 1m 62-73. DOI: 10.1352/1934-9556-51.01.062

Herrick, H.W.B., Luken, K. (2012). The burden of heart disease among adults with disabilities, North Carolina Medical Journal, 73(6):499-503. Parish, S.L., Swaine, J.G., Son, E. & Luken, K. (2012) Receipt of mammography among women with intellectual disabilities: Medical record data indicate substantial disparities for African American women. Disability and Health Journal. 6(1):36-42. doi: 10.1016/j.dhjo.2012.08.004.

Parish, S.L., Swaine, J.G., Luken, K., Rose, R.A., & Dababnah, S. (2012).Cervical and breast cancer screening knowledge of women with developmental disabilities. Intellectual & Developmental Disabilities. Parish, S.L., Rose, R.A., Swaine, J.G., Luken, K., & O’Hare, L. (2012). Cancer screening knowledge changes: Results from a randomized control trial of women with developmental disabilities. Research on Social Work Practice, 22, 43-53. [DOI: 10.1177/1049731511415550].

Parish, S.L., Rose, R.A., Swaine, J.G., Luken, K., & O’Hare, L. (2012). Changes in women’s knowledge about cervical and breast cancer screening: Evidence from a randomized controlled trial of a health promotion intervention. Research on Social Work Practice, 22,43-53.

Jarman, M.P., Bowling J.M., Dickens P., Luken K., Yankaskas, B.C. (2012) Factors facilitating acceptable mammography services for women with disabilities. Women's Health Issue. 22(5):e421-8. doi: 10.1016/j.whi.2012.06.002. Epub 2012 Jul 17.

Miles, D.R., Steiner, M.J., Luken, K., Sanderson, M. R., Coyne-Beasley, T., Herrick, H. Mizzelle, E. Ford, C. A. (2011) Health and Educational Status of Children Raised by a Caregiver with a Disability. Disability and Health Journal, Jul; 4(3):185-91. [DOI:10.1016/j.dhjo.2011.03.004].

Herrick H, Luken K, Dickens P. Women with Disabilities and Heart Disease. NC BRFSS Surveillance Update, No. 5. Raleigh, NC, July 2011. DHHS, Chronic Disease and Injury Section, State Center for Health Statistics, NCODH, UNC-CH.

Swaine, J. G., Parish, S.L., Luken, K., & Atkins, L. (2011). Recruitment and consent of women with intellectual disabilities in research studies. Journal of Intellectual Disability Research, 55, part 5; 474–483. [DOI: 10.1111/j.1365-2788.2011.01399.x]

Yankaskas, B. C, Dickens, P., Bowling, J. M., Jarman, M. P., Luken, K., Salisbury, K., Halladay, J., Lorenz, C. (2010). Barriers to adherence to screening mammography for women with disabilities. American Journal of Public Health, Vol. 100, No. 5, pp. 947-953. doi: 10.2105/AJPH.2008.150318

Hodges, J.S., & Luken, K. (2006). Stakeholders’ perceptions of planning needs to support retirement choices by persons with developmental disabilities. Therapeutic Recreation Journal, 40, 94-106.

Curriculum Dickens, P., Luken, K., Parish, S.L., & Swaine, J.G. (2011). Women Be Healthy 2: A curriculum to increase cervical and breast cancer screening rates of women with intellectual and developmental disabilities. Chapel Hill, NC: North Carolina Office on Disability & Health.

Policy Briefs, Monographs, & Other Reports

Swaine, J.G., Parish, S.L., & Luken, K. (2012). Health screenings for women with developmental disabilities: Notes for social workers and case managers. Waltham, MA. Lurie Institute on Disability Policy, Brandeis University. http://lurie.brandeis.edu/pdfs/healthscreening%20for %20women%20with%20DD.pdf

Swaine, J.G., Parish, S.L., & Luken, K. (2011). Research: A guide for self-advocates with disabilities. Waltham, MA. Lurie Institute on Disability Policy, Brandeis University.

Swaine, J.G., Parish, S.L., & Luken, K. (2011). Increasing cervical and breast cancer screening rates for women with developmental disabilities: Interim report to the North Carolina Division of Mental Health, Developmental Disabilities & Substance Abuse Services. Chapel Hill, North Carolina: University of North Carolina School of Social Work.

Parish, S.L., Swaine, J.G., Luken, K., Rose, R.A., Dababnah, S., & Fichtenbaum, R. (2011). Increased knowledge of breast and cervical cancer screening needed among women with developmental disabilities. Waltham, MA: Lurie Institute for Disability Policy, Brandeis University. http://lurie.brandeis.edu/pdfs/pb3-womens-knowledge.pdf

Dickens, P., Luken, K. Dababanah, Parish, S.L. (2011). Recommended Health Screenings for Women with Disabilities. Waltham, MA: Lurie Institute for Disability Policy, Brandeis University.

Parish, S.L., Swaine, J.G., Luken, K., & Moss, K. (2010). Improving cervical and breast cancer screening for women with developmental disabilities in North Carolina. Report for the North Carolina Division of Mental Health, Developmental Disabilities & Substance Abuse Services. Chapel Hill, North Carolina: School of Social Work, University of North Carolina at Chapel Hill.

NC Dept. of Health and Human Services, Division of Mental Health, Developmental Disabilities, Substance Abuse Services, Carolina Institute of Developmental Disabilities and NCDOH (2010). North Carolina and the National Core Indicators Survey brochure.

NC Dept. of Health and Human Services, Division of Public Health, State Center for Health Statistics, Children Raised by a Caregiver with a Disability: North Carolina (2010). Fact Sheet posted at http:www.schs.state.nc.dhhs.gov/champ

Journal reviewer Journal of Intellectual and Developmental Disabilities, Trauma, Violence, & Abuse Journal of Disability and Health Journal of Intellectual Disabilities

Professional Service (2006-2013) National Center on Health, Physical Activity and Disability, University of Alabama, Disability Rehabilitation Research Program, Committee chair, 2011-2015. NC State Sexual Violence Prevention Team, Intellectual and Developmental Disabilities Committee, NC Division of Public Health, 2011-present. NC Division of Mental Health, Developmental Disabilities, Substance Abuse Services, Practice Improvement Collaborative, 2005- present. NC Institute for Public Health, Women’s Integrated Health Services, Committee member, 2010-12. NC Division of Public Health grant reviewer: local health departments physical activity grants and Rape Prevention Education grants, spring 2012. NC Department of Transportation Pedestrian Safety curricula (K-5) curriculum reviewer, spring 2012. Arc of NC, NASI-funded Vulnerable Communities Social Security grant, Advisory Committee, 2010-11. FPG CDI Strategic Plan, Health Committee, co-chair, 2009-2011. NC Autism Alliance, 2008 – present NC Immunization Coalition, 2006- present. Eat Smart Move More NC Leadership Team, 2005-2012. NC Division of Public Health, Special Care Dentistry Advisory Work Group, 2009-2010. NC Institute of Medicine, Developmental Disabilities and Transition Task Force, 2008-2009. NC Council on Developmental Disabilities Summit, 2008 NC Council for Allied Health, Chair, 2007-2009 American College of Sports Medicine technical work group to develop specialty certification on inclusive fitness, 2007. American Association of Disability and Health technical assistance for local Susan G. Komen grant to address access to breast healthcare services for women with disabilities, 2007. NC Council on Developmental Disabilities. Technical assistance for recipients of Access to Primary Healthcare grants, 2004-2007. Center for Women’s Health Research, Women’s Report Card, Advisory group, 2007. XDS Inc., Board of Directors, not-for-profit agency serving individuals with co-occurring disabilities living in the community, 2004 - 2008 NC Association of Self Advocates Advisor to the, 2004- 2008. CDC Extra-mural research grants panel reviewer for, 2006

Student and Professional Mentoring (2006-2013) UNC-CH, School of Public Health, School of Social Work, student internship, summer 201 University of South Carolina, MPH student practicum, spring 2013 UNC-CH, undergraduate mentoring, spring 2013 UNC-CH, School of Public Health, Health Policy student service learning team, fall 2012 UNC-CH School of Public Health, Maternal and Child Health student team, Program Assessment class, spring 2012. Oral Health and People with Disabilities UNC-CH School of Public Health, Maternal and Child Health student team, Program Assessment class, spring 2011, Public Health Surveillance Systems. UNC-CH APPLES intern, Women’s Health project, spring 2010 UNC-CH School of Social Work intern placement, fall 2008 – spring 2009. Washington University OT PhD. student, summer 2007

Abbreviated Presentations (2006- 2013) Luken, K. Mackey, C. Rauworth, A. Strengthening Your Knowledge and Skills to Assist Women with Disabilities to take Control of Their Health workshop, June, 2013. Luken. K. Marin, S., Kohlander, C., Rossi, C. Dickens, P. Training Sexual Assault Nurse Examiners in the Provision of Services to Survivors with Intellectual and Developmental Disabilities, Innovations in Domestic and Sexual Violence Research and Practice Conference: Collaborative Approaches to Prevention and Intervention, April 2013. Luken, K. and Mackey, C. Meeting the Health Needs of Women with Disabilities, hosted by NC WISEWOMAN and Cancer Control Program, March 2013. Luken, K. Fundamental Elements of Accessibility: promoting equitable access for victims with disabilities, NC Victims Assistance Network, Victims’ Advocates Certification Academy, March 2013. Luken, K. Using the Affordable Care Act to Promote the Health of People with Disabilities, UNC Minority Health conference, February, 2013 Luken, K. and Mackey, C. Ensuring Access for People with Disabilities, hosted by the NC Community Health Center Association, February, 2013. Luken, K. Health Disparities Experienced by People with Disabilities, NC Division of Public Health EPI-Evaluation team, Raleigh, NC, September 2011. Luken, K. Evaluating the Health of People with Disabilities. NC Division of Public Health, Community of Practice, Raleigh, NC. September, 2011. Luken, K, Ross, G. Dickens, P. NC Office on Disability and Health. NC Division of Public Health, Chronic Disease and Injury Section, Raleigh, NC, 2011. Luken, K. Women Be Healthy. Planned Parenthood, Wilmington, NC, August, 2011. Luken, K. Dickens, P., Jones, M. Supporting People to Get Healthier Lives through Person Centered Practices, Person Centered Practices, Chapel Hill, NC May, 2011. Hiss, B Mackey, C., Madrigal, J., Luken, K., Inclusive Fitness Training Workshop: Exercise Programming for Individuals with disabilities and Activity limitations, Greater Charlotte YMCA, March 2011. Luken, K. Swaine, J.G, Dickens, P., Wright, G. Women Be Healthy: Improving Cervical and Breast Cancer Screening for Women with Developmental Disabilities, FPG CDI Seminar, November 2010. Luken, K. NC Governor’s Conference on Aging, Removing Barriers to Community-based Dental Services, poster presentation, October, 2010. Reinhartsen, D.B., Pretzel, R.E, Kelsey, K., Greenleaf Bailey, R., Luken, K, Fernandez, M., Simmons, A., and Qadura, T. Analysis of National Core Indicators Data: does healthcare vary according to type of funding? AUCD poster presentation, Oct 2010. Luken, K. Wright, G. Dickens, P, Mackey, C. Let’s Talk About Health, The Arc of NC conference, Sept, 2010. Luken, K. Mackey, C. Promoting Inclusive Health and Fitness Opportunities for People with Disabilities, CDC Obesity Prevention Course, Chapel Hill, NC, August, 2010. Luken, K. Overview of the NC Plan to Promote the Health of People with Disabilities, NC Immunization Coalition, June, 2010. Miles, D.R., Steiner, M.J., Luken, K., Sanderson, M. R., Coyne-Beasley, T., Herrick, H. Mizzelle, E. Ford, C. A. Health and Educational Status of Children Raised by a Caregiver with a Disability Health Care Access and Health Status of Children Raised by a Parent with Disabilities: Results from the 2007 and 2008 North Carolina BRFSS and CHAMP Surveys, poster presentation, Behavioral Risk Factor Surveillance System Conference, CA, March 2010. Hiss, B Mackey, C., Luken, K., Inclusive Fitness Training Workshop: Exercise Programming for Individuals with disabilities and Activity limitations, Richmond, VA, March 2010. Luken, K. Wright, G. Dickens, P, Mackey, C. There’s Nothing More important than Your Health, The Arc of NC conference, Sept, 2009. Luken, K. NC Office on Disability and Health, Livable Communities panel, Annual CDC State Grantees meeting, New Orleans, April, 2009. Luken, K. NC Office on Disability and Health, Surveillance panel, Annual State Grantees meeting, New Orleans, April, 2009. Fernandez, M, Greenleaf, R., Luken, K. Development of the North Carolina and the NCI Surveys brochure, HSRI webinar, March 2009. Mackey, C., Luken, K., Hiss, B. Adapted Fitness: exercise assessment and programming for persons with disabilities. RUSH fitness complex, Jamestown, NC. November, 2008. Mosley, C. Taub, S. Luken, K. Thompson, S. Exploring Disability Data sets: Overview of Core Indicators Project. The Role of Public Policy in Addressing the Health Related Needs of Individuals with Disabilities, AUCD webinar, October 2008. Luken, K., The Role of Public Policy in Addressing the Health Related Needs of Individuals with Disabilities, UNC-CH School of Nursing, 2008. Luken, K. Emergency Preparedness: ensuring the needs of persons with disabilities are addressed. Orange County Health Dept. Community meeting, September, 2008. Luken, K. Using Data to Address the Health Needs of Persons with Disabilities, Montana Rehabilitation and Research Center, September, 2008. Dickens, P., Luken, K. Women Be Healthy Workshop, Montana Disability and Health Program, Missoula, Montana, September 2008. Dickens, P., Luken, K. Building Community Partnerships to Support Women Be Healthy Implementation, Montana, September 2008. Luken, K. Mackey, C. Improving Access: Ensuring Opportunity for Seniors with Disabilities, NC DAAS Senior Management Training Institute, Clemmons, NC. 2008. Mackey, C., Luken, K. Removing Barriers in Fitness Environments: promoting access for persons with disabilities, RUSH fitness complex, June 2008. Luken, K. Promoting the Health of Women with Intellectual Disabilities. Healthy Women, Healthy Babes conference, AHEC, Greensboro. NC 2008. Moss, K. Luken, K. The Importance of Healthcare Advocacy. Best Practices in Services and Supports for Persons with Developmental Disabilities. High Point, NC. March 2008 Luken, K. Reaching New Heights in Quality Health care, Best Practices in Services and Supports for Persons with Developmental Disabilities. High Point, NC. March 2008 Mackey, C. Luken, K. Removing Barriers in Fitness Environments: promoting access for persons with disabilities, YMCA Asheville, February 2008. Luken, K. Dickens, P. Access for All: Patients with Disabilities. Medical Society of NC. Charlotte, NC 2007. Moss, K. Luken, K. Healthcare and Safety Planning: a prerequisite for living in the community. NC Council for Community Programs conference, 2007. Luken, K. Mackey, C. Adapted Fitness: Wilmington, NC. 2007. Luken, K. Overview of the NC Office on Disability and Health, CDC Disability and Health Team external review panel, October, 2006, Atlanta, GA. Luken, K. Innovative and Non-traditional Partnerships in the Development of Health and Wellness Program for Persons with Disabilities. NCBDDD State Grantee & External Partner Annual Meeting, June 2006, Ames, Iowa Mackey, C. Luken, K. Emergency Preparedness, Best Practices in Community Supports and Services, April, 2006, Greensboro, NC.

Abbreviated Summary of Funded Awards (2006- 2013) North Carolina Office on Disability and Health. 4-2007 – 12-13 Contract with the North Carolina Division of Public Health, based on a cooperative agreement funded by the Centers for Disease Control and Prevention, to promote the health of people with disabilities, prevent secondary conditions, and eliminate disparities between people with and without disabilities.

Enhancing Communication for Sexual Assault Nurse Examiners. 7-2011 - 6-2013. NC Governor’s Crime Commission. This project is designed to improve the forensic exam experience of victims with intellectual disabilities by developing educational resources for sexual assault nurse examiners. Activities include convening expert panels of SA professionals, women with IDD & family members to ensure relevance & appropriateness of training & resources; development of communication guidelines, a resource tool kit & training workshop; development of a web-based training that can be sustained after the project ends,.

Obesity Research Project on Prevalence, Adaptations and Knowledge Translation in Youth and Young Adults with Disabilities from Diverse Race/Ethnic Backgrounds grant, Chair of Physical Activity Expert Panel, 5-2011 – 9-016. University of Alabama - Birmingham. Lead responsibility for developing strategy adaptations and program modifications for all areas of physical activity.

Community Health Inclusion Index. University of Illinois-Chicago. 1-12 – 11-13. Lead for NC recruitment of 2 focus groups: teens with disabilities and work site health promotion professionals.

Improving Breast and Cervical Cancer Screening for Women with Developmental Disabilities, 10-1-2009 – 9-30-2012 US Dept. of Education, National Institute of Disability Rehabilitation and Research. This research study, conducted in partnership with Brandeis University and UNC-CH School of Social Work, is evaluating the impact of the Women Be Healthy intervention on 4 outcomes: (1) the sense of confidence and mastery of women related to their reproductive health care; (2) the knowledge of women regarding their health care; (3) actual receipt of health care services, including Pap tests and breast exams; and (4) anxiety of women related to their health care.

Partnerships for Breast Health, 4-1-2010 – 6-30-2011. Susan G Komen NC Triangle Affiliate. Improve access to breast health care and screening for women with disabilities in the following counties: Durham, Franklin, Johnston, Orange and Wake through the use of evidence-based interventions in partnership with the Alliance of Disability advocates.

Improving Access to Services for Women with Intellectual Disabilities, 7-1- 2009 – 6-30- 2010. Orange County Rape Crisis Center, Increase the knowledge and skills of sexual assault nurse examiners (SANEs) and agency staff and volunteers about serving female sexual assault survivors with mild to moderate intellectual disabilities.

Support, Educate, Screen . 4-1-09 – 3-31-10 Susan G Komen NC Triangle Affiliate. Establish a women’s health support group for women with intellectual disabilities at a local Community Rehabilitation Program; provide family members and caregivers of the members of the women’s support group with information about breast healthcare during a women’s night out workshop; develop a disability supplement for the Radiography course curriculum at a local community college to teach students about providing mammography screening to women with intellectual disabilities; and support an established Compensatory Educatory (Comp Ed) program to include newly developed health education resources into the Women Be healthy curriculum.

Physical Activity For All, 4-01-08 – 3-31-12 National Center on Physical Activity and Disability, Partner with the National Center on Physical Activity and Disability to support activities related to the Centers for Disease Control and Prevention, Physical Activity for People with Disabilities Information Resource Center. Activities will support education and training, technical innovation, and best practices that promote physical activity for all.

AWESM: All Women: educate, screen, mammogram. 4-1-08 – 3-31-09 Susan G Komen NC Triangle Affiliate. Provide education and breast cancer screening services to women with intellectual disabilities who receive services in four Community Rehabilitation Programs in central North Carolina. Provide breast health education to caregivers, mammography technologists and healthcare professionals.

1,2,3: Breast Care Works. Susan G. Komen for the Cure, 5-1-07 – 6-30-09 Development of a developmentally appropriate breast health education material for women with intellectual disabilities.

Breast Cancer 3 Day Disabilities Pilot Program. 4-01-08 - 3-31-09 National Philanthropic Trust Breast Cancer 3 Day Increase participation by persons with disabilities in 3 Day fund raising events by improving the accessibility of the 2008 Chicago event.

Access for All: Fundamental Elements of Accessibility7-01-07 – 6-30-09 NC Governor’s Crime Commission, Promote statewide implementation of the Fundamental Elements of Accessibility that relate to core service elements required of community sexual assault and domestic violence service agencies in order to improve the accessibility of community based services for survivors of assault with disabilities.

Access For All: Developing Systems Change. 7-01-2005 – 6-30-2007 NC Governor’s Crime Commission. Develop Fundamental Elements of Accessibility that relate to core service elements required of community sexual assault and domestic violence service agencies in order to improve the accessibility of community based services for survivors of assault with disabilities.