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Explore publications and presentations featuring members of the IDD Health Equity Consortium.

2024

2024 News

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February 2024 | March 2024 | April 2024 | May 2024 | June 2024

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. https://www.liebertpub.com/doi/full/10.1089/tmj.2023.0547

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 health equity 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

2023 News

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April 2023 | May/June 2023 | July 2023 | August 2023 |

September 2023 | October 2023 | November 2023 | December 2023

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

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

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

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.