Foreign entities are not eligible to compete for, or receive, awards made under this announcement.
Individuals with ID/DD have a lower life expectancy than their peers without disabilities as a result of many compounding factors. One persistent driver is a lack of access to routine and lifesaving care because of the limited number of qualified health care providers with training in ID/DD. People with ID/DD are more likely to have a greater need for health care. They have an increased incidence of secondary health conditions associated with their disability, such as seizures, mental illness, cardiovascular disease, diabetes, dental diseases, and other conditions. Further, and more significantly, individuals with ID/DD are at risk of being denied lifesaving medical treatments and care as a result of medical providers making inaccurate predictions about their life expectancy and having negative perceptions about their quality of life.
A 2004 study found there are a limited number of health care providers who will accept adult patients with ID/DD. Physicians report a lack of experience with the ID/DD population and the training necessary to provide health care to individuals with ID/DD. As a result, physicians are frequently not comfortable providing health care to individuals with ID/DD (Reichard and Turnbull, 2004).
There is great variability in the extent to which disability-specific content is offered in medical and allied health education programs. At best, programs may offer disability awareness training. A survey of allopathic and osteopathic American medical schools found that 52 percent reported having a disability awareness program that most often used people with disabilities or caregivers speaking in a large group setting. These programs were most likely to focus on adults with physical disabilities rather than individuals with a range of disabilities (Seidel, Erica, Crowe, and Scott, 2017).
In 2006, Iezonni published Going beyond Disease to Address Disability and cited a number of programs that were being offered in medical schools, including:
•Standardized Patient Exercise and Pediatric Clerkship at the University of Medicine and Dentistry of New Jersey, New Jersey Medical School, Newark, NJ
During their pediatric rotation, all third-year students spend one day at Matheny Medical and Education Center, which serves children and adults with developmental disabilities. After introductory sessions, each student performs a 20-minute interview with a standardized patient, an adult with speech disabilities who has been trained to represent common medical conditions. After the interviews, standardized patients provide feedback using electronic communication devices or yes-or-no responses to questions.
•Caring for Adults with Disabilities at the University of South Florida College of Medicine, Tampa, FL
This module is integrated into the 16-week primary-care clerkship for third-year students. It addresses older adolescents and adults with physical, sensory, and cognitive disabilities through two afternoon seminars with guests from the local community of persons with disabilities; home and community visits; service learning projects; and writing a reflection on the experience.
•Annual Disability Plenary Session, University of Illinois–Chicago College of Medicine, Chicago, IL
This half-day session is part of a required Essentials of Clinical Medicine course for second year students. Presentations vary from year to year, including performances by artists with disabilities, films about living with disability, and presentations from faculty members with expertise in caring for persons with specific disabilities.
•The “Wheelchair Experience” University of Pennsylvania School of Medicine, Philadelphia, PA
This four-hour disability simulation is required of all first-year students as part of the Doctoring I Professionalism and Humanism curriculum. Students work in pairs, one using a wheelchair to perform specified day-to-day tasks while the other serves as caregiver. Students then switch roles. Afterward, students write a two-page essay about the experience. In addition, a person with a disability or a family caregiver interacts with students in small groups, describing disability-related experiences and answering students’ questions (Iezzoni, 2006).
While well-meaning, these types of training experiences point to the limited amount of time medical students spend learning about health care for people with disabilities. While this disability awareness training offers medical and allied health students some information with respect to people with disabilities, it falls well short of providing the amount of adequate training necessary to provide quality health care to people with disabilities. In addition, disability simulations, such as the “Wheelchair Experience,” may ultimately cause more harm rather than enlighten attitudes about people with disabilities. For example, participants in disability simulations have concluded that people with disabilities are less capable than the general population. (Silverman, Gwinn, & Van Boven, 2014; Nario-Redmond, Gospodinov and Cobb, 2017).
The lack of meaningful training impacts the extent to which health care providers can provide adequate care to individuals with ID/DD. Medical students who do not receive any training on or experience with the ID/DD population have been found to exhibit poorer performance caring for patients with ID/DD in tasks varying from taking a medical history, conducting physical exams, and ordering laboratory tests (Brown, Graham, Richeson, Wu, and McDermott, 2010).
Yet, there is evidence that early and frequent experiences with people with disabilities can improve medical students’ knowledge and attitudes about disability, thereby increasing their comfort level in providing care to people with disabilities (Brown, Graham, Richeson, Wu, and McDermott, 2010; Jackson, 2007; Larson McNeal, Carrothers and Premo, 2002; Long-Bellil et al., 2011; Rose, Kent and Rose, 2011; Thistlethwaite and Ewart, 2003; Tracy and Iacono, 2008).
In an effort to fill the disability training void in medical and allied health training programs, there has been a growing effort to develop training resources (e.g., competencies, curriculum, trainings) to better prepare the health care workforce to more effectively interact with and meet the health care needs of individuals with disabilities. For example, in 2016, the National Center for Birth Defects and Developmental Disabilities (NCBDDD) at the Center for Disease Control (CDC) developed competencies for the public health professionals already working in the public health field. These competencies can be adapted and embedded into new or existing public health curricula and training programs (https://disabilityinpublichealth.files.wordpress.com/2016/06/competenci…).
More recently NCBDDD invested in a project to develop core competencies on disability for health care education. These competencies establish broad disability standards that serve as a baseline of expertise required by health care practitioners to provide quality care to individuals with disabilities. It is intended for health care education faculty to integrate the competencies into existing curricula (https://nisonger.osu.edu/wp-content/uploads/2019/08/post-consensus-Core…).
There are many academic books on disability and health, as well as specific texts on ID/DD. In addition, there are various web-based trainings and curricula available, such as a training curriculum for medical professionals on improving the quality of care for people with disabilities by the World Institute on Disability, the Special Olympics Online Learning Portal, and the Health and Disability 101 Training for Health Department Employees offered by the National Association of County and City Health Officials.
Perhaps the most concerted effort to date to include ID/DD content in medical education programs is the National Curriculum Initiative in Developmental Medicine (NCIDM). This program founded by American Academy of Developmental Medicine & Dentistry (AADMD) works with medical schools to integrate ID/DD content into the medical school curriculum. NCIDM has partnered with 18 medical schools to embed ID/DD content into their medical school curriculum.
Despite these efforts, there is no wide scale adoption of ID/DD content into medical school curriculum. Furthermore, education programs for allied health professionals have had little exposure to these efforts. Without the health and other care needs of the ID/DD population incorporated into more training programs, the health care workforce will not have the knowledge, skills, attitudes, and competence necessary to provide high quality healthcare to the ID/DD population.
The Administration for Community Living, Administration on Disabilities (AoD) seeks to fill this gap and improve health outcomes for the ID/DD population by funding a national consortium that will build on existing efforts to collaborate with medical and allied health schools to embed ID/DD content into their curriculum. This project will be a critical activity as part of AoD’s strategic priority to decrease health disparities of individuals with ID/DD. In 2019, AoD established two key, long-term strategic priorities and has aligned resources to decrease the health disparities of individuals with disabilities (AoD’s second strategic priority is to increase opportunities for competitive, integrated employment). AoD recognizes that a leading contributor to these health disparities is the denial of routine, preventative, and life-saving care as well as limited access to qualified healthcare providers.
This project will complement the AoD funded Center for Dignity in Healthcare for People with Disabilities (CDHPD) at the University of Cincinnati Center for Excellence in Developmental Disabilities (UCCEDD), which is part of AoD’s strategic priority to reduce health disparities. In 2019, AoD funded this first of its kind Center to lead a national coalition that will develop resources for healthcare professionals to understand the civil rights and support the needs of Americans with disabilities as they access routine and lifesaving care throughout the lifespan. The Center will also engage people with ID/DD and their families to learn more about advocacy related to healthcare discrimination. It is anticipated that resources from this Center will be utilized in this project and embedded into medical education training curriculum.
The Administration on Disabilities (AoD) seeks to fund a five-year cooperative agreement that will increase and accelerate current efforts to embed ID/DD content into medical and allied health school education programs. The goal of the project is to expand access to quality healthcare for individuals with ID/DD by increasing the ID/DD-specific knowledge, skills, attitudes, and competence of the health care workforce. By funding this project, AoD seeks to create greater health equity and increase life expectancy of the ID/DD population.
In the proposal, applicants must describe how they will incorporate the following components into the project:
Establishment of a national ID/DD health care training consortium: A key component of the project will involve the creation of a consortium of disability experts to guide all aspects of the project, including the development of an overall plan for embedding content specific to improving the health of individuals with ID/DD into the training curricula of medical and allied health education programs.
This consortium will include:
Professionals who have experience developing disability-specific competencies, curricula, and training for medical and allied health professions;
Practitioners from medical and allied health, including faculty and national association members; and
Individuals with ID/DD, families, and other relevant stakeholders in their support networks.
The application should describe the methods planned for ensuring active and meaningful engagement of all consortium members in all aspects of the project.
The applicant should describe a plan of operation that describes how the consortium will be managed to ensure the goals and objectives for the project are achieved, including how they will use a consensus-based, participatory process in carrying out the activities of the project.
A signed Memorandum of Understanding (MOU) between the applicant and members of the consortium must be submitted as part of the application. The MOUs should specify expectations of consortium member participation.
Use of a consensus-based, participatory process to conduct background research, identify core ID/DD competencies, and establish a plan for embedding ID/DD content: The applicant should describe how they will working through the consortium:
Complete an environmental scan that will identify and inventory existing ID/DD training resources that can be used by medical and allied health schools to embed ID/DD content into the curriculum. This should include any training resources developed by the Center for Human Dignity in Healthcare for Individuals with Disabilities. The environmental scan may include broader disability training resources that could be adapted to include ID/DD content in medical and allied health curriculum. The applicant should describe how the environmental scan will guide the creation of a gap analysis to identify information that is needed to ensure medical and allied health professionals have the training resources needed to provide health care to individuals with ID/DD.
Complete a survey of the medical and allied health schools regarding their use of ID/DD and other disability training resources, including but not limited to how many students have completed the trainings, the level of interest in embedding ID/DD content into their existing curriculum, and barriers to embedding ID/DD content into their existing curriculum.
Complete a survey of individuals with ID/DD, their families, and others in their support network on their health care experiences, needs, and outcomes and the competencies they think are important for health care providers.
Use the information from the environmental scan and the surveys to identify the core competencies that medical and allied health professional students should know and be able to be able to do to provide health care to people with ID/DD and standards for embedding ID/DD content into medical and allied health curriculum.
Develop a plan for partnering with medical and allied health schools to embed ID/DD content based on the core competencies into their curriculum. The plan should include how training resources inventoried in the environmental scan or developed as a result of the gap analysis can be used to assist with embedding ID/DD content into the curriculum.
Partnership to embed ID/DD content into healthcare workforce training programs: The applicant will describe how the consortium will utilize their plan to establish partnerships with medical and allied health education training programs to promote the adoption of and assist with the integration of ID/DD content into their education programs, including how they may partner early on in the project with healthcare workforce training programs.
Dissemination of materials: Applicants will describe how they will utilize the consortium and their partners in making the information developed under this project available to the general public, including medical and allied health schools not involved as a partner. The applicant should also provide a plan to disseminate findings from this project for implementation in other sites and/or states.
Evaluation to assess progress and determine outcomes from the project. The applicant will describe how process evaluation techniques will be used to analyze delivery of project activities to determine, among other things: (a) the extent to which the project is implemented as planned, (b) how the project activities are being received by the schools and allied health, (c) the barriers to implementation, and (d) areas for project improvements/refinements. The applicant will also describe how summative evaluation techniques will be used to determine project success in meeting the intended outcomes of the project in terms of an increase in the:
Number of medical and allied health professional students trained in ID/DD;
Student knowledge of the health care needs of individuals with ID/DD;
Number of medical and allied health professionals reporting being prepared to provide health care to individuals with ID/DD; and
The knowledge and skills of the medical and allied health care faculty to train students on the ID/DD population.
Sustainability: An expected outcome of this project will be sustainability in terms of health care workforce training programs embedding ID/DD content into their training curriculum. During the course of the project, efforts should be made to generate the sufficient resources and strategies for organizational and financial sustainability to ensure work remains viable and current.