Explore publications and presentations featuring members of the IDD Health Equity Consortium.
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2026 News
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January 2026 | February 2026 | March 2026 | April 2026 | May 2026 | June 2026 | July 2026
July 23rd | Advocate Advisory Meeting
At this month’s meeting, our goal was to gather insights from our advocates on the topics the team should focus on at the upcoming Diagnostic Excellence Conference in October, using an open-spaces format. The meeting began with a brief overview of the open-spaces meeting format, and then the floor was open to discussion.
We had a great conversation about the importance of proper AI utilization in the diagnostic process and how to dismantle myths about the IDD community to improve it. Over the next month, our team will revise the conference workshop plan of action and present our updated plan at the August meeting. The next meeting is August 27th at 9 am CST! We look forward to seeing you all there!
Advocate Advisory Committee Presentation 7.23.2026
July 22nd | Education CAN Meeting
At this month’s meeting, Dr. Holly Brown, Dr. Jane Tobias, and Dr. Rick Rader shared their takeaways and lessons learned from three national conferences: the Developmental Disabilities Nurses Association (DDNA), the American Academy of Developmental Medicine and Dentistry (AADMD), and the American Association of Nurse Practitioners (AANP).
Across all three conferences, several consistent themes emerged: disability education needs to move beyond a niche specialty topic and be embedded into mainstream training. The presentation closed with a great discussion on how to redesign postgraduate health professions education to make disability training more accessible and scalable, and how to get more healthcare professionals to engage more broadly with the needs of individuals with IDD. Thank you again, Dr. Brown, Dr. Tobias, and Dr. Rader, for speaking with the group. Below are the links to the presentation and recording for anyone who was unable to attend. Our next meeting will be October 28th at 9 am CST/ 10 am EST!
Education CAN presentation 7.22.2026
Education CAN Recording 7.22.2026
July 13th | Communication CAN Meeting
At this month’s Communication CAN meeting, we had an amazing presentation by Katrina Simons on the important steps to take when communicating the stories and lived experiences of people with IDD. Katrina hosts the podcast Boldly Challenging Ableism, which exposes ableism and dismantles myths that marginalize people with disabilities. You can learn more and check out all her episodes here. We also had the opportunity to hear from Dr. Quon about the research Ryan Burke, an intern from Purdue, has been conducting on disability-focused, disability-led storytelling/media sources. If you were unable to attend, the slide deck and recording from the meeting are available below! Our next meeting is Monday, October 12th, at 9 am CST/ 10 am EST.
Communication CAN Recording 7.13.2026
Communication CAN Presentation 7.13.2026
June 25th | Advocate Advisory Meeting
At this month’s meeting, Dr. Quon presented information about the upcoming Diagnostic Excellence (DEX) conference that the team will host in the fall. The team was accepted to present a workshop at the conference on how clinicians can partner with families and community caregivers to reduce diagnostic delays for people with IDD. Importantly, the workshop will include patient and family representatives as co-facilitators of the workshop.
The group had an insightful discussion about the importance of having adequate spaces for people with IDD in healthcare settings. There was also a discussion about holding “open space” meetings, a participant-driven meeting format where attendees co-create and manage the agenda themselves. to surface the priorities of the attendees and better connect with individuals. Below is the presentation for anyone to review the information further. Our next meeting will be held on July 23rd at 9 am CST / 10 am EST!
Advocate Advisory Committee Meeting Presentation 6.25.26
June 2026 | Steering Committee Meeting – June 3rd
At this month’s steering committee meeting, Dr. Sarah Ailey presented on the current and future work of the EDO grant. This ranged from our environment of care tracers, chart reviews, simulation meetings, and more! She also introduced the topic of storytelling through a blog format, where our team could interview individuals and share their experiences with the healthcare system to better provide insight as to how systems could change to better support their needs. The group also discussed how new toolkits are in the works and how the integration of AI into different aspects of our work could lead to innovative change. Below is the presentation from this meeting to review. Our next meeting will be held on Wednesday, August 5th, at 10 am CST/ 11 am EST!
Steering Committee Recording 6.3.26
May 2026 | Advocate Advisory Meeting – May 28th
At this month’s advocate meeting, we had the opportunity to hear directly from our advocates about which topics need further exploration in the disability healthcare space. Dr. Sarah Ailey presented our current work on the Ending Diagnostic Overshadowing grant, then opened the floor for discussion. We had a wonderful discussion about the importance of sharing real-life experiences in our healthcare system. We hope to explore this more in the future in a blog/vlog format, where we can share the voices of individuals to provide insight into what they experience and how the healthcare system can improve to provide equitable care for individuals with disabilities. Below is the slide deck from the meeting for viewing. Our next meeting will be held on June 25th, 2026, at 9 am CT.
Advocate Advisory Presentation
May 2026 | Measurement CAN – May 27th
At this month’s Measurement CAN meeting, we had the pleasure of hearing from Dr. Megan Pohlmann and Dr. Lisa Angel. Dr. Pohlmann presented her findings from her dissertation on exploring the real-world experiences of neurodivergent nurses in their various roles. Dr. Angel presented her research on “Bridging Instrument Gaps for People with ASD & IDD”. We are always grateful to hear about the important and impactful research that is being done in the disability healthcare space. To further review the presentation, the slide deck and recording are available below!
April 2026 | Advocate Advisory Meeting
At this month’s Advocate Advisory meeting, we had the pleasure of hearing from Lily Caglianone about her research on mammography screening rates for women with severe mental illness. She presented her work, which involved exploring the predictors for women not receiving a mammogram, which population was most at risk, and what further action can be done to increase the rate of mammograms in women with severe mental illness. She recently successfully defended her master’s on this research and will be graduating in May! A big congratulations and thank you to Lily for sharing such important research with us. To further dive into all she had to share, please review the slide deck below!
April Advocate Advisory Presentation
April 2026 | Education CAN: Simulation Excellence in IDD Healthcare Part 2
On April 22nd, we hosted our 2nd Simulation Excellence in IDD Healthcare meeting, led by Dr. Rick Rader and Dr. Holly Brown. We explored several examples of IDD-based simulation approaches, including standardized patients, lifecast body simulations, virtual reality, and international models. Thank you to all our panelists for sharing their expertise on simulation!
- Dr. Jennifer Arnold, MD, MSc – Boston Children’s Hospital
- Dr. Rick Rader, MD, FAAIDD, FAASM, DHL – Orange Grove Center
- Dr. Linda Ghampson, DNP, RN, CHSE – Yale School of Nursing
- Crystal Dobri, MS, RNC-MNN, CHSE – St. John Fisher University Wegmans School of Nursing
- Dr. Anupam Thakur, MBBS, MD, MSc – University of Toronto
The Simulation Excellence in IDD Healthcare sessions brought together educators, clinicians, and community partners to understand how simulation can better prepare healthcare professionals to support people with intellectual and developmental disabilities. The meeting focused on sharing specific simulation examples involving people with intellectual and developmental disabilities as participants. Strategies across disciplines were compared, and practical ways to expand access to high‑quality simulation were identified. Presentation slides and the meeting recording are linked below for anyone interested. Thank you to all who contributed to deepening our understanding of simulation and its importance.
April 2026 | Communication CAN Meeting
On April 13th, we held our communication CAN meeting, where we heard from Mia Gardner and her work at We Care and Connect Heartland, LLC, a community-driven resource network to support those with disabilities and the neurodivergent population in Kansas and Western Missouri. Their online website covers resources helpful to the intellectual and developmental disability (IDD) community and operates on high standards of equity, advocacy, inclusion, and care. During this presentation, the importance of communication, resource allocation, and the referral process was discussed in ways to improve the IDD communities. Below is a link to the presentation slides and recording. If you are interested in learning more about the work We Care and Connect Heartland, LLC does, please click here to view the PowerPoint, and please click here to watch the recording! Additionally, you can view their website: https://heartland.help/
March 2026 | Advocate Advisory Committee Meeting
On March 26th, Dr. Patricia West, PhD, RN, an assistant professor from Michigan State University, led a wonderful presentation on Level Up Your Health: Nursing Research Scientist Development Grant initiative funded by the National Institute of Nursing Research (NINR), to address gaps in physical activity programs for adolescents with intellectual and developmental disabilities (IDD). Her work focuses on ensuring teens with IDD are engaged in opportunities for physical activity programs and developing interventions.
To view the presentation from the meeting, click the link here.
March 2026 | Education Consortium Action Network (CAN) meeting on Simulation
On March 11th, we held a bonus education CAN meeting focused on simulation work and its importance. Simulation is increasingly central to health professional education, offering safe, structured environments where learners can practice communication, clinical reasoning, and person-centered care. Yet people with intellectual and developmental disabilities (IDD) continue to face significant inequities, and most training programs provide limited opportunities to learn skills specific to supporting this population. During this meeting, we had the opportunity to hear from Sue Kilroy from Villanova University, Suzanne Smeltzer from Villanova University, Bridget and Nancy Brown, who have worked as a Standardized Patient Actor and Support Person, respectively, and Rebekah Fettkether from Special Olympics. We had a very insightful and informative discussion as well about how these courses should be implemented as requirements for healthcare students. The question was also posed about how the success of these courses can be measured.Thank you so much to everyone who presented and joined. Below is a link to the presentation slides. We will be continuing the conversation of simulation work at the next Education CAN meeting on April 22nd at 9:00 am CT. We hope to see you all there!
March 11th Education CAN presentation
February 2026 | Measurement Consortium Action Network (CAN) meeting
On February 11, we had our first Measurement CAN meeting for the year. At this meeting, we had the pleasure of having Dr. Anna Quon, an assistant professor at Rush University and Co-I on the Ending Diagnostic Overshadowing grant, present her research from her dissertation about mammography screening rates for women with Autism Spectrum Disorder and/or Intellectual Disabilities. Her findings concluded there is a major scarcity in screening numbers among this population, and she provided some future projects to help combat this inequity, including identifying the barriers to screening, providing pre-visit educational materials, and updating the Rush Disability+care website to include resources for women about the importance and process of being screened. Check out her presentation along with the recording of the meeting below. Thank you, Dr. Quon, for speaking with us!
Measurement CAN presentation slides
February 2026 | Steering Committee meeting
On February 4th, we had our first steering committee meeting of this year, where Dr. Sarah Ailey discussed the no-cost extension that the PATH-PWIDD grant was given, which will fund the project for the next 8 months. Dr. Lisa Angel presented the ongoing work with the grant, which includes work with DePaul and Michigan State University with AISLE, the dissemination of the advanced residency program at St. John Fischer, and simulation work at Villanova and UIC, with talks of the adoption of these programs at other institutions. Along with this, the no-cost extension has allowed Rush University to run the AISLE program for this spring semester, and the hopes to have University funding for the future. We also discussed updates for the EDO, including the meeting with Dr. Hardeep Singh to discuss the current manuscript and nurses’ SaferDX instrument with feedback, the findings from the three mock tracers conducted at the three Rush facilities (Rush Oak Park, Rush Copley, and Rush Medical Center), and the hopes to conduct two focus groups targeted at patient preparation for provider visits and improving mammogram screening rates in women with ASD and/or ID
We also had the pleasure of hearing from our amazing intern from Purdue University, Emmanuel Ayala. Emmanual presentated on his literature findings about the barriers to women receiving mammograms. He also presented on what programs are currently in place, along with suggestions for where improvements to access to mammograms could be made.
Check out the recording and presentation slides below for further information:
Steering committee presentation
January 2026 | Education Consortium Action Network (CAN) meeting
On January 28th, we had our first education CAN meeting of the year. During this meeting, we had the opportunity to hear from Dr. Holly Brown and Dr. Rick Rader on their work with Project D.I.M.E.! Project D.I.M.E stands for Disability-Inspired Medical Education, and its goals are to create educational material for healthcare professionals to be educated on best practices when caring for patients with disabilities. Below are links to the Project D.I.M.E website, the presentation that our group heard, and a recording of the meeting!
Project D.I.M.E. Website
Project D.I.M.E. Recording
Porject D.I.M.E. Presentation
January 2026 | Communication Consortium Action Network (CAN) meeting
On January 12th, we had our first Communication Consortium Action Network (CAN) meeting of the year! The Communication CAN oversees EDO communication strategies to ensure that all communication efforts are inclusive and transparent across partners and communities involved in the EDO program. This meeting featured a presentation by Carole Schwartz on the work done by the Alliance for Disability in Health Care Education (ADHCE) to develop their website, which disseminates a wide variety of information and resources. To view Carole’s presentation, please click the link here and to view the recording, please click the link here. To explore the variety of resources the ADHCE website has to offer, please click the link here
2025 News
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September 2025 | Dr. Sarah Ailey: Recipient of the Eugene J-M.A. Thonar, Ph.D., award
The Disability Health Equity community would like to congratulate Dr. Sarah Ailey on receiving the Eugene J-M.A. Thonar, Ph.D., award! Sarah Ailey, PhD, APHN, FAAN, professor, Department of Community, Systems and Mental Health Nursing, was nominated by Kathryn Swartwout, PhD, APRN, FNP BC, her Department Chairperson in the College of Nursing. Dr. Ailey is a professor, funded researcher, expert educator, and national advocate, well known for her expertise in working with individuals with intellectual and developmental disabilities. Thank you, Dr. Ailey, for your continual work and advocacy to reduce health disparities by creating a health care workforce ready to provide equitable care to individuals with disabilities.
August 2025 | Dr. Sarah Ailey’s Presentation of the Evaluation of PATH-PWIDD Over the Past 5 years
At the Communication Community Action Network meeting and the Advocate Advisory meeting this month, Dr. Sarah Ailey presented an evaluation of the progress made through the PATH-PWIDD program. The presentation provided an overall project overview, along with an overview of the ongoing materials being used across multiple organizations. The presentation can be viewed here.
June 2025 | Core Partners Panel at American Association on Intellectual and Developmental Disabilities (AAIDD)
At the annual American Association on Intellectual and Developmental Disabilities (AAIDD) meeting June 22-24, core partners Dr. Renata Ticha of the University of Minnesota, along with Drs. Unholz-Bowden, Roberts, and Houseworth led a panel titled “Community-Driven Insights for Supporting Young Adults with IDD in Transition Across Urban and Rural Regions in Minnesota.” Dr. Brian Abery of the University of Minnesota was on a panel, “Growing Connections and Empowering Inclusion: Evaluating the Unified Champion Schools (UCS) Program.”
June 2025 | Project Partners Present at Golisano Fellowship Immersive Week
Core partners Dr. Ticha and Dr. Abery delivered a presentation titled “Preference, Choice, and Self-Determination in the Healthcare Context” at the 5-day intensive session from June 16-20, kicking off the 2025-2026 Golisano Fellowship in Developmental Disability Nursing program. Communication CAN member Dr. Ann Cary presented on developing leadership strengths in the context of nursing.
June 2025 | Dr. Ailey Presents on Collective Impact Model (ACHNE Institute)
Dr. Sarah Ailey gave a presentation at the Association of Community Health Nurse Educators annual conference, June 5-7, on the “Benefits of use of Collective Impact Model in the Partnering to Transform Health Outcomes with Persons with Intellectual and Developmental Disabilities (PATH-PWIDD) Program.” Please email Dr. Ailey if you would like a copy.
June 2025 | From the 4Ms to a Disability-Friendly Healthcare System (The Gerontologist)
Dr. Teresa Moro, a member of the IDD Health Equity Steering Committee, recently published “From the 4Ms to a Disability-Friendly Healthcare System” in The Gerontologist.
April 2025 | New Toolkit and Teaching Strategies for Healthcare Providers Working with People with IDD
Dr. Suzanne Smeltzer, core partner on the IDD Health Equity project, recently published an IDD toolkit and teaching strategies for health care providers working with people with IDD on the National League for Nursing website. View these exciting new resources on the Advancing Care Excellence for Persons with Disabilities section (ACE.D.)
April 2025 | Occupational Therapy’s Role in Supporting Persons with Cognitive and Communication Impairment in Acute Hospital Settings (The Open Journal of Occupational Therapy)
Measurement, Outcomes, and Evaluation CAN member Dr. Molly Bathje and Communication CAN member Carole Schwartz recently published an article on the role of occupational therapists in improving health outcomes for people with cognitive and communication impairments in acute care settings.
March 2025| Project Partners Present at the Midwestern Nursing Research Society (MNRS)
The 2025 Midwestern Nursing Research Society (MNRS) conference was held in Indianapolis, IN on March 26-29. Dr. Sarah Ailey at Rush University participated in poster sessions and discussions, and Dr. Patricia West at Michigan State University presented on her work implementing an interprofessional course on disability at MSU.
March 2025 | Dr. Suzanne Smeltzer Presents at the NLN Nursing Education Research Conference
Slides from core partner Dr. Suzanne Smeltzer’s March 28 presentation to the NLN Nursing Education Research Conference are now available online. View “The Effects of a Virtual Simulation on Knowledge and Comfort Level of Healthcare Students in Their Interaction with Individuals with Intellectual and Developmental Disability (IDD).”
March 2025 | Alliance for Disability in Healthcare Education (ADHCE) Scholarship Available
The Alliance for Disability in Healthcare Education (ADHCE) is offering a scholarship of up to $1,000 to an individual or group of healthcare professional students (any discipline) with a program/project that enhances healthcare education in disabilities. Applications are due by 11:59 PM on May 1, 2025.
February 2025 | We All Learn When Working with Standardized Patients with Disabilities (HELEN)
Peris Bennett, Kayla Shields, and Dr. Rebecca Weston published an article in HELEN: The Journal of Human Exceptionality about their work integrating people with IDD as standardized patients at the University of Maryland through a partnership with Special Olympics Maryland. Dr. Weston recently presented to the Education, Practice, and Policy Consortium Action Network regarding this project.
January 2025 | Utilizing Simulation-Enhanced Interprofessional Education to Identify Differences in Healthcare Students’ Collaborative Practice Behaviors: A Mixed Method Study (Nurse Education Today)
EPP CAN member Susan Kilroy and steering committee members Beth Marks, Mike Koronkowski, and Blase P. Brown recently published an article about their IPE pilot in Nurse Education Today.
2024 News
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December 2024 | Golisano Institute for Developmental Disability Nursing Receives Special Olympics Health Grant (St. John Fisher University News)
Project partners at the Golisano Institute for Developmental Disability Nursing at St. John Fisher University received $50,000 through the Special Olympics Health 2024 Systems Change in Inclusive Health Subgrant, funded by the Centers for Disease Control and Prevention. The grant will fund the creation of professional development materials that will prepare advanced practice providers (APPs) to deliver quality care to individuals with intellectual and developmental disabilities (IDD).
November 2024 | WITH Foundation Funds AISLE Expansion to Three Universities
Dr. Sarah Ailey at Rush University was recently awarded $128k from the WITH Foundation to extend the reach of the Advanced Interprofessional E-Service Learning Experience with People with IDD (AISLE) program to DePaul University, Michigan State University, and the University of Massachusetts Dartmouth.
October 2024 | An Invitation to Examine Ableism in Psychiatric Nursing Practice (Archives of Psychiatric Nursing)
A new article by the Golisano Institute for Developmental Disability Nursing’s Holly Brown, DNP, RN, PMHNP-BC, PMHCS, and Janiece DeSocio, PhD, RN, PMHNP-BC, FAAN, explores the impacts of ableism in psychiatric nursing and ways clinicians can prevent ableism and address disparities in mental health outcomes for people with IDD.
October 2024 | Improving Care and Accessibility for Rural Patients with Disabilities (The Rural Monitor)
People with disabilities in rural areas face many barriers to healthcare, including transportation, inaccessible buildings and equipment, and providers’ lack of experience. Experts cited in the article include Dr. Rebecca Kronk, former president of the Alliance for Disability in Healthcare Education (ADHCE).
September 2024 | New Disability+ Care Website at Rush University
In collaboration with Project PI Dr. Ailey, graduate nursing students at Rush University identified a need to make resources for patients with disabilities easier to access. They collaborated with the website team at Rush and senior leaders and experts in content, marketing, and community communication to design a new, user-friendly webpage, Disability+ Care, with all the info patients and providers need in one place. The Disability+ Care site was created with input from the IDD Health Equity Advocate Advisory Committee. In addition to frequently consulted departments and specialists, the site has videos of physicians talking about their experiences with and perspectives on caring for patients with IDD. Pictured, left to right: Ashleigh Darin, Dr. Sarah Ailey, Mia Blankensop, and Mike Clark.
August 2024 | Project Partners Present at 2024 IASSIDD Congress
The 2024 International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) Congress included several presentations from IDD Health Equity partners. View the full list of IDD Health Equity activities.
August 2024 | Project PI and Partners Awarded NIH Grant
Dr. Sarah Ailey, PI, was awarded an R01 grant from the Eunice Kennedy Shriver National Institute of Child Health and Human Development of the National Institutes of Health. The grant will fund the End Diagnostic Overshadowing: Addressing Ableism in the Healthcare Context program.
July 2024 | Why Are We Still Teaching “Levels of Prevention” in Healthcare Professions Education? (Visible Magazine)
A key concept in public health education is fundamentally ableist and perpetuates health disparities for people with disabilities. A recent article coauthored by project PI Dr. Sarah Ailey explains why the “Levels of Prevention” framework needs to go.
July 2024 | Establishing Best Practices in Telehealth Care for Adults with Developmental Disabilities in the United States: An e-Delphi Study (Telemedicine and e-Health)
Many Americans have incorporated telehealth into their healthcare routines. However, outcomes for individuals with intellectual and developmental disabilities (IDD) using telehealth have been varied. In a recent publication co-authored by project PI Sarah Ailey and Education, Practice, and Policy Committee member Kathleen Fisher outline best practices for providers to enhance the quality of healthcare for people with IDD.
June 2024 | From Pipettes To Policy, Science Educators Advocate For Change Via Communication (Daily Bruin)
Dr. Lauren Clark, a member of the IDD Health Equity Evaluation, Practice, and Policy Consortium Action Network (EPP CAN), was recently highlighted in an article in the Daily Bruin about new classes that seek to apply scientific knowledge in the context of social advocacy. Dr. Clark’s course, “Sexual and Reproductive Health Care for People with Disabilities,” asks students to analyze the biases and policies that impact the reproductive health and parenthood rights of individuals with IDD.
May 2024 | Dismantling Ableism: Promoting a Culture of Diversity, Equity, Inclusion, and Accessibility for Nurses With Disabilities (Journal of Psychosocial Nursing and Mental Health Services)
A new editorial featured in the Journal of Psychosocial Nursing and Mental Health Services from Rush University addresses systemic ableism in nursing education despite an estimated 4.3 million RNs living with disabilities.
March 2024 | Alliance for Disability in Healthcare Education (ADHCE) Scholarship Available
The Alliance for Disability in Healthcare Education (ADHCE) is offering a scholarship of up to $1,000 to an individual or group of healthcare professional students (any discipline) with a program/project that enhances healthcare education in disabilities. Applications are due by 11:59 PM on May 1, 2024.
February 2024 |“We have met the enemy, and it is us”: Healthcare professionals as the barrier to health equity for people with intellectual and developmental disability (Research in Nursing & Health)
Project partners Dr. Cooney Miner, Dr. Sarah Ailey, and Dr. Holly Brown, authored this article regarding the role of healthcare professionals as barriers to improving healthcare outcomes for people with IDD.
February 2024 | Health professionals’ education related to people with intellectual and developmental disabilities: A scoping review
A new scoping review from PATH-PWIDD partners reveals gaps in the education of healthcare professionals regarding the health and healthcare needs of people with IDD. Among the gaps identified by the authors are a need for more participation from the IDD community, the absence of intersectionality, and the continued use of the medical model of care.
2023 News
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December 2023 | Project PI Dr. Sarah Ailey featured in “Nursing that Transforms”
Dr. Sarah Ailey was featured in the 2023 edition of the Rush University College of Nursing magazine, “Nursing that Transforms.” The interview, titled “A Powerful Voice for Individuals with Disabilities” begins on page 18.
December 2023 | Why Pay Attention to Recruitment and Retention of Students with Disabilities (NCSBN Leader to Leader)
The op-ed “Why Pay Attention to Recruitment and Retention of Students with Disabilities” co-authored by Dr. Sarah Ailey was featured in the National Council of State Boards of Nursing (NCSBN) publication, Leader to Leader. The article begins on page 10.
November 2023 | Inaugural Health Equity Summit (Helen: The Journal of Human Exceptionality)
In the November issue of Helen, project partner David A. Ervin, BSc, MA, FAAIDD, and project PI Sarah Ailey, Ph.D., RN, PHNA-BC, CNE, CDDN, FAAN reviewed the proceedings of the Inaugural Health Equity Summit: Developing a Model of Healthcare for People with Intellectual and/or Developmental Disabilities in the Washington, DC Metropolitan Area. Held in May 2022, the Summit was attended by leaders in academics, human services, and community support agencies.
September 2023 | Project Partners Sign Onto Letter to NIMHD Advisory Council
The Minority Health and Health Disparities (NIMHD) Advisory Council recently rejected advocates’ recommendations to designate people with disabilities as a “health disparity population.” In response to this omission, PATH-PWIDD partners signed onto a letter initiated by Dr. Bonnielin Swenor, Director of the Johns Hopkins Disability Health Research Center, and Dr. Jae Kennedy, Professor of Community and Behavioral Health at the Washington State University College of Medicine, urging them to reconsider. People with disabilities meet all guidelines for inclusion, and this designation is critical for recognition and access to needed resources.
July 2023 | Project Highlighted in Catholic Charities Deaf and Disabilities Ministry Newsletter
Dr. Sarah Ailey was interviewed for the July newsletter of the Deaf and Disabilities Ministry of Catholic Charities of Kansas City-St. Joseph, where she highlighted the work of the IDD Health Equity Consortium. More information on the Deaf and Disability Ministries is available on the Catholic Charities website.
June 2023 | Project Partners Serve As Mentors in Nursing Fellowship Program
Dr. Sarah Ailey, project PI, Steering Committee members Dr. Suzanne Smeltzer and Dr. Renata Ticha, and Communication CAN members Dr. Ann Cary and Dr. Joan Earle Hahn will serve as mentors for the Golisano Fellowship in Developmental Disability Nursing, a 12-month program designed to develop nursing thought leaders and change-makers committed to improving healthcare for individuals with IDD. Advocate Advisory Committee member Jesus Chuy Campuzano provided the final keynote for the Fellowship’s immersive week-long conference June 12-16.
June 2023 | Project Partners Present at ADCHE Annual Conference
Dr. Sarah Ailey, project PI, presented Rush pilot results at the ADCHE Annual Conference on June 15. Co-investigator Dr. Molly Bathje, assistant professor at DePaul University, moderated the morning presentations. Dr. Melissa Bourne, a mentor at the Golisano Fellowship in Developmental Disability Nursing, presented on the topic of clinical nursing faculty perceptions about teaching undergraduate nursing students to provide care for adults with IDD.
June 2023 | Dr. Ailey Receives Advancing Health Equity Award
Project PI Dr. Sarah Ailey was awarded the Advancing Health Equity Award at the 2023 Association of Community Health Nurse Educators (ACHNE) Association of Public Health Nurses (APHN) Joint Conference. This award is presented to “an individual who has made significant contributions to advancing health equity in the field of community/public health nursing.”
April 2023 | Opinion: Will Proposed ACGME Requirements Have Consequences for Kids With Autism? (MedPageToday)
Dr. Sarah Ailey, project PI, and Dr. Holly Brown from the Golisano Institute for Developmental Disability Nursing published an op-ed in MedPageToday, discussing the potential impacts of proposed changes to ACGME requirements.
April 2023 | Makom Takes Its Place (Impact)
David Ervin, a member of the Education, Practice, and Policy Consortium Action Network, contributed an organizational profile of Makom to the latest edition of Impact. Makom is a nonprofit organization that supports self-determined lives for individuals with IDD, including finding ways to remain a part of their chosen neighborhood, community, or faith.
2022 News
December 2022 | New Training Focuses on Patients with Disabilities (UIC Today)
Advocate Advisory Committee members Bridget and Nancy Brown are featured in this story about UIC’s new interprofessional program, which provides pharmacy, dentistry, and nursing students with experience working with individuals with disabilities.
December 2022 | Hospitals Can be Dangerous Places for People with IDD (Visible Magazine)
Project partners Dr. Sarah Ailey from Rush University and Dr. Holly Brown from the Golisano Institute for Developmental Disability Nursing collaborated on an op-ed for Visible Magazine, addressing the many risks for hospitalized individuals with IDD.
October 2022 | Dr. Sarah Ailey Receives Outstanding Alumni Achievement Award
The UIC College of Nursing’s 2022 alumni award recognizes nursing alumni demonstrating a commitment to improving health outcomes through nurse-led research.
October 2022 | Disability as Diversity
Dr. Sarah Ailey and Dr. Beth Marks were cited in a recent publication, “Disability as Diversity-A Guidebook for Inclusion in Medicine, Nursing, and the Health Professions,” by Lisa M. Meeks and Leslie Neal-Boylan.
October 2022 | Assessing The Dangers Of A Hospital Stay For Patients With Developmental Disability In England, 2017–19 (Health Affairs)
A publication by Drs. Beth Marks and Jasmina Sisirak was cited in a recent Health Affairs article about avoidable in-hospital safety incidents.
September 2022 | Nurses with Disability: Transforming Healthcare for All (The Online Journal of Issues in Nursing, a Scholarly Journal of the American Nurses Association)
In this article, consortium partners Dr. Beth Marks and Dr. Jasmina Sisirak discuss disability, ableism, and nursing. They also discuss universal design structures for access that can be useful to support students and nurses, as well as recommendations for nursing education and practice.
September 2022 | Caring for People with Intellectual and Developmental Disabilities (IDD) During the COVID-19 Pandemic: A Transcontinental Study (Journal of Epidemiology and Community Health)
COVID-19 had profound impacts on the basic care needs of individuals with IDD across the globe, according to a new transcontinental study co-authored by project partners, including Drs. Sarah Ailey, Judith Stych, and Golisano Institute Fellow Melissa Desroches.
September 2022 | Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities (Journal of Palliative Medicine)
Individuals with IDD need quality palliative care. Drs. Sarah Ailey and Suzanne C. Smeltzer of the core team contributed to an article that provides tips to palliative care clinicians.
August 2022 | Stop the Madness: Ukraine Treatment of People with IDD (Visible Magazine)
An op-ed by Dr. Sarah Ailey highlights the dire conditions facing people with IDD in Ukraine and the need for change in the long-term care workforce.
August 2022 | Improving Health Outcomes in Neurodiverse Populations through Health Care Provider Education (AOTA)
Improving health care provider education is key to better health outcomes in neurodiverse populations, according to a recent publication in the American Occupational Therapy Association (AOTA) SIS Quarterly Practice Connections. The article is co-authored by project co-investigator Dr. Molly Bathje.
July 2022 | Mental Health of Older Adults With Intellectual Disability (Journal of Psychosocial Nursing and Mental Health Services)
Across most age groups, individuals with intellectual disability (ID) have higher rates of mental health conditions than their peers in the general population. Dr. Sarah Ailey, Dr. Tamar Heller, and Dr. Holly Brown discuss the education, policy changes, and research needed to improve mental health care for this population in a recent issue of the Journal of Psychosocial Nursing and Mental Health Services.
June 2022 | Better Care for Patients with Disability (ACP Internist)
Dr. Sarah Ailey was quoted in a recent ACP article about a lack of knowledge among physicians about their legal responsibilities under the ADA.
April 2022 | Healthcare Bias is Lowering the Standard of Care for People with Disabilities During the COVID Crisis (Visible Magazine)
In this op-ed in Visible Magazine, Dr. Sarah Ailey discusses the bias against people with disabilities that negatively impacted their healthcare treatment decisions during the COVID-19 pandemic.
February 2022 | National Council on Disability Releases New Health Equity Framework
On February 23, the National Council on Disability (NCD) released a Health Equity Framework for People with Disabilities. In the week preceding the official release of the framework, nurse leaders from the PATH-PWIDD consortium delivered a letter to NCD Chairman Andrés Gallegos urging the NCD to work with nursing education, accreditation, and licensing organizations to ensure that nurses are adequately prepared to provide quality healthcare to individuals with a disability.
January 2022 | Are We Equipped to Care for People With Intellectual, Developmental Disabilities? (MedPage Today)
In this op-ed in MedPage Today, Dr. Sarah Ailey discusses how accreditation standards for medical professionals can impact care for individuals with intellectual and developmental disabilities.
2021 News
December 2021 | Project PI Presents at NASEM (National Academies)
Dr. Sarah Ailey presented the PATH-PWIDD project at December’s National Academies of Sciences, Engineering, & Medicine 3-day workshop, Exploring an Optimal Integrated Care System for People with Intellectual and Developmental Disabilities.
December 2021 | Dr. Suzanne C. Smeltzer Awarded 2021 Book of the Year for her book “History and Public Policy: Delivering Quality Healthcare for People with Disability”
Core team member Dr. Suzanne C. Smeltzer, RN, ANEF, FAAN, from Villanova University Fitzpatrick College of Nursing, received a 2022 Book of the Year Award from the American Journal of Nursing. Her book, “Delivering Quality Healthcare for People with Disability,” will educate the next generation of nurses in providing high-quality, evidence-based care that addresses the needs of people with disability.
December 2021 | Why High Uber Fees Mean a Less Inclusive Health Care Industry (Next City)
Dr. Sarah Ailey discusses the surprising link between Uber and better healthcare for all in this op-ed in Next City.
2020 News
September 2020 | PATH-PWIDD Project Funded by Administration for Community Living
The Administration for Community Living (ACL) Awarded a New Grant to Strengthen Healthcare Workforce and Address Health Disparities among People with Intellectual and Developmental Disabilities.
December 2020 | New Program Aims To Train Health Care Professionals On Developmental Disabilities (DisabilityScoop)
The U.S. Department of Health and Human Services Administration for Community Living has allocated $1.75 million over the next five years toward the [PATH-PWIDD] initiative, which will bring together five universities to study existing trainings and develop materials and standardized practice experiences that can be incorporated into the curriculum for students in health care fields.