Plenary: Roadmap for Health Equity Data for Adults with IDD, 2019-2029

Friday June 5 | 12:30pm - 2:00pm EST

Abstract

Adults with IDD are invisible in health surveillance data. Most recent comprehensive data is from 1994-95. Without data on prevalence of IDD and health of adults, it’s impossible to determine at a population level the nature and size of health disparities, and if policies and programs are effecting improvements. The Administration on Community Living is collaborating with other agencies to achieve equity in health data for adults with IDD.
Based on two national workgroup reports (national surveillance, state administrative data), a recent special issue of Intellectual and Developmental Disabilities (Oct., 2019) and a Summit of advocates and researchers (11/19), a roadmap for equitable health data is under development. Identified issues include:

  • Prevalence—need for a consistent measurement definition of intellectual and developmental disabilities; implement and test new survey identification questions

  • Indicators—identify key indicators of health/wellbeing; identify social context indicators

  • Communicate and advocate –Support work to identify IDD as a medically underserved population; disseminate cognitively accessible data briefs for different audiences (persons with IDD, legislators, advocacy groups)

  • Learn more from what we have—map current/emerging data sources, populations covered (e.g., Medicaid, NCI for served) and their finding; disaggregate analyses to better target problems and interventions; data analytics to maximize information from existing data (linking, interoperability, harmonizing)

  • Research— new data such as long-term studies; standardized strategies for proxy- vs self-reporting

Next steps are to reach out to groups including adults with IDD, families and care providers to learn the pressing health questions in daily life and care of adults with IDD. What information is most needed to assess and improve health? How should information be shared? This session will provide a roadmap update to AADMD members and request their input on these vital issues. The roadmap is intended to guide health data efforts for the coming decade.

  1. Learning Objective: To understand the need for and value of improved prevalence and health data for adults with IDD

  2. Learning Objective: To learn about recent partnership progress s to develop a roadmap for improved data on prevalence and health of people with IDD

  3. Learning Objective: To learn from and contribute to dialogue that identifies the most pressing health issues that need surveillance data for improved health equity

 
 

Speaker Bio(s)

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Gloria L. Krahn, PhD, MPH

Dr. Krahn has focused on applied disability research, interdisciplinary clinical service, and program administration and public policy development to improve health of persons with disabilities, particularly intellectual and developmental disabilities. She is a former UCEDD and RRTC director; and directed federal programs and policy on health promotion and disabilities at CDC. Her publications helped identify people with disabilities as a health disparity population, and documented the “cascade of health disparities” for persons with IDD. She currently consults to the federal government to advance its work advancing health equity data for people with IDD.

 
 
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Jennifer Johnson, EdD

Dr. Johnson is the Deputy Director of the Administration on Disability, Administration for Community Living. She is a federal leader in collaborating across federal agencies to promote health equity data for people with IDD. Previously, Dr. Johnson worked in private sector organizations such as the Council for Exceptional Children, the National Clearinghouse for Professions in Special Education, and the National Information Center for Children and Youth with Disabilities. Her work focused on a broad variety of disability issues, including early care and education, implementation of disability policy, the intersection of disability and diversity, and professional development for educators.

 
 
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Susan M. Havercamp, PhD

Dr. Havercamp directs the RRTC on Mental Health and IDD, Health Promotion and Healthcare Parity at the Nisonger Center, and the Ohio Office on Disability and Health to promote health of people with disabilities. Her research focuses on physical and mental health in people with disabilities and has been highly instrumental in bringing national attention to health surveillance of people with IDD. She serves as the disability issue representative for diversity and inclusion for Association of American Medical Colleges. She is a core member of the collaborators working to advance health equity data for people with IDD.

 
 
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Alexandra Bonardi, MA, MS

Ms Bonardi, senior policy associate at HSRI, directs the IDD team and the National Core Indicators effort. She is experienced and skilled in participatory research, integrating her experience as a clinical occupational therapist and her efforts to engage a range of stakeholders in developing effective systems of support. She was principal investigator on several grants, including a falls prevention initiative, a systems change project to enhance access to assistive technology, and a Citizen’s Jury to develop autism data collection recommendations. She is a core member of the collaborators working to advance health equity data for people with IDD.

 
 
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Julie Weeks, PhD

Julie Weeks, PhD serves as the Chief of the Measures Research and Evaluation Research Branch at the National Center for Health Statistics. Dr. Weeks’ research focuses on all aspects of disability and functioning, including measurement development and analysis, and incorporating standard measures into both national and international data collections, and population aging. Her work includes membership on the following: Secretariat and Steering Committee, UN Washington Group on Disability Statistics and the UN Titchfield Group on Ageing; the Census Bureau’s 2025 ACS Content Test Committee; the Interagency Committee on Disability Research, Executive Committee; and the American Statistical Association’s Committee on Statistics and Disability. Her current work also includes leading the Quality of Life and Well-Being work group for DHHS’ Healthy People initiative, as well as membership on both the Disability and Health and Older Adults work groups.

 
 
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Katherine Cargill-Willis

Katherine Cargill-Willis is a Program Specialist with the Administration on Disabilities, Administration for Community Living, Health and Human Services.  Her portfolio has included work with the University Centers for Excellence in Developmental Disabilities Education, Research, and Service (UCEDD), the Developmental Disabilities Councils and the Projects of National Significance

 
 
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Amanda Reichard, PhD

Amanda Reichard, PhD works at the National Institute on Disability, Independent Living and Rehabilitation Research (NIDILRR) as a project officer. Throughout her career she has conducted research focused on disability and health, wellness promotion, and health services. She has used national survey data, and Medicare and state Medicaid administrative claims data to analyze health care access, health care utilization, public health surveillance, and disparities among people with disabilities of many types. In addition, she has worked in public health for over 20 years and has often been a part of academic groups working in the area of improving the field’s ability to identify people with I/DD for surveillance and research.