Developmental Medicine

Advocating for

adults with intellectual and developmental disabilities

Developmental Medicine

The National Curriculum Initiative in Developmental Medicine (NCIDM) is a collaborative effort of MAHEC, the American Academy of Developmental Medicine and Dentistry (AADMD), and the Family Medicine Education Consortium (FMEC), guided by leadership from medical educators and clinicians across the country representing a broad range of disciplines.

To develop, pilot, and evaluate curricular resources regarding healthcare for adults with intellectual and developmental disabilities, and to advocate for implementation of these resources into the standard training of all physicians.

To expand the content of medical education for students and residents to include topics and principles related to the care of adults with intellectual and developmental disabilities thereby enhancing optimal health care, access, and quality of life for this medically underserved population.

Guiding Principles
People with intellectual and developmental disabilities (IDD) should receive culturally and linguistically appropriate patient-centered care that is comprehensive, evidence based, individualized, respectful, and longitudinal across the life span, regardless of age, gender, race, etiology, severity of diagnosis, physical environment, or nature of their disability.

Medical providers across all clinical specialties, most especially primary care providers, should attain minimum core competencies in the care of persons with IDD. They should facilitate appropriate ancillary and sub specialty services within the context of the healthcare system and framework of our society at large.

MAHEC has been engaged in continuing education and advocacy efforts to improve access, quality of services, and systems of care for persons with developmental disabilities since 2004. With ongoing support from the North Carolina Council on Developmental Disabilities and a one-year grant from the Milbank Foundation, MAHEC has gained experience and garnered national attention in the emergent field of adult developmental medicine.

In preparation for the work, in 2004 MAHEC conducted surveys of health providers, self-advocates, families and direct care staff in 50 of North Carolina’s 100 counties. While the data indicated there was a need for improved education of health professionals in the care of persons with developmental disabilities across the lifespan, there were significant gaps in access and services for adults with intellectual and neurodevelopmental disorders. MAHEC followed the data collection and analysis with key informant interviews, speaking one-on-one with representatives of adults with intellectual and developmental disabilities, their advocates, and providers in medicine, dentistry, allied health, and mental health disciplines. Additionally, a comprehensive search of the scientific literature was conducted.

Armed with this array of information, MAHEC sponsored eight continuing education events for healthcare providers between 2005 and 2006. Workshops for physicians, dentists, pharmacists and mental health providers were offered, and more than 400 participants attended the seminars.

During this same period, the American Academy of Developmental Medicine and Dentistry (AADMD) was conducting an extensive Curriculum Assessment of Needs (CAN) study. The CAN study surveyed all U.S. medical school deans, physician residency program directors, medical students and deans of dental schools to elicit what types of training specific to developmental disabilities were incorporated into their curricula. The national data indicated the majority of medical schools and residency programs provided three hours or less training in this area, and many provided no focused training specific to intellectual and developmental disabilities. However, a clear majority of the respondents (including students) indicated an interest, and a number reported they would include developmental medicine topics but lacked curriculum content.

While the AADMD and MAHEC projects were underway, another group was considering curriculum development as well. The Family Medicine Education Consortium (FMEC) is a not-for-profit corporation which supports the educational and scholarly needs of family physicians. Among its goals are the development of programs and services that promote leadership skills for its current and future family medicine leaders and building relationships that will lead to scholarly efforts that address issue of interest within family medicine. The FMEC sponsors a number of collaborative projects toward this end, and since 2003, the FMEC has sponsored annual educational sessions specific to the medical home model for persons with intellectual and other developmental disabilities.

Understanding that traditional continuing medical education lectures and conferences were limited in impacting systems of care, MAHEC began work on developing curriculum for a mini-fellowship in adult developmental medicine in 2006. It was during this period of discovery and further exploration of resources that MAHEC discovered the AADMD’s CAN report. Also in 2006, a representative of MAHEC and the mini-fellowship attended her first FMEC meeting. Thus, informal communication among the three organizations began in the fall of 2006. By the time the first curriculum for the MAHEC Mini-Fellowship in Adult Developmental Medicine was completed, and the first cohort of physicians came forward in 2007, representatives of both organizations (AADMD and FMEC) enrolled as members of the first cohort.

A second cohort of the mini-fellowship was launched in 2009, but by then, it had become clear that a coalition of those seeking a national resource for curriculum development was needed. Interestingly, between the initiation of the three key organizations’ respective efforts and 2009, several new singular efforts had come to light. A growing number of medical schools and residency programs were engaged in their own efforts, some providing a combination of didactic and clinical training, others offering elective studies. What was lacking was a general consensus of content or peer review of the processes being piloted.

In 2010, MAHEC received renewed funding from the North Carolina Council on Developmental Disabilities to continue its medical curriculum efforts. A few months later, the AADMD received a significant grant from the Walmart Foundation to partner with MAHEC and the FMEC with a goal of developing a national curriculum in developmental medicine. It was at a meeting of the FMEC in the fall of 2010 that the collaboration of MAHEC, FMEC and AADMD was formalized into the National Curriculum Initiative in Developmental Medicine (NCIDM).

The NCIDM has continued relationship-building and has expanded its reach. The steering committee is composed of physicians and educators from a broad cross-section of medical specialties and sub-specialties, including pediatrics, family medicine, internal medicine, and geriatrics. These individuals come from a variety of academic institutions and professional organizations. A group of advisors, equally representative of academic, professional and advocacy organizations, also provides consultative support to the NCIDM. With the advice and counsel of individuals within these constructs, the NCIDM has further evolved and is in dialog with international, like-minded teachers of medicine in Canada, Great Britain, Australia, and the Netherlands.

A pilot of the curriculum is underway in North Carolina at three family medicine residency programs and more are expected in other states in 2013-14.

Testimonial Videos

Irene Jurczyk, BBA

Laurence Bauer, MSW

Rosaly Correa-de-Araujo, MD, MSc, PhD

Deborah Dreyfus, MD

Caryl J. Heaton, DO

Barry Martin, MD

Julie Moran, DO

Jeffrey Okamoto, MD

Rick Rader, MD

Carl Tyler, MD, CMD, MS

David Wood, MD, MPH