By | April 9, 2019

Formal education preparing nurses, physicians, dentists, and other healthcare clinicians to guide care for persons with intellectual and developmental disability (IDD) may be deficient in the United States. As care of individuals with IDD has shifted from institutions into the community, the need for educated healthcare clinicians has increased. Furthermore, persons with IDD are living longer and experience the same age-related conditions as the general population. While efforts are underway to educate healthcare clinicians on the intricacies of caring for persons with IDD, a knowledge gap—and an insufficient number of qualified clinicians—may still exist.

Persons with IDD can have distinctive and oftentimes complex medical conditions. Many individuals have multiple co-morbidities secondary to their disability diagnosis. The lack of disability-educated clinicians may place the person with IDD at risk for not receiving the person-centered, quality care they deserve.

Personal and Professional Connection

I personally became interested in the issues of IDD and healthcare with the birth of my youngest daughter. She was born premature at twenty-five weeks gestation, weighing 1 pound and 5 ounces She had multiple health issues during the first year and was later diagnosed with a mild intellectual disability. As a mother, I experienced first-hand how important it was to have clinicians who understood her healthcare needs.

Professionally, I previously was the healthcare director for a nonprofit organization providing 24-hour support to individuals with IDD. In that position, I witnessed on a grander scale how the lack of clinician knowledge about IDD adversely affected individuals. Having clinicians with an understanding of IDD is vital to ensure the right treatment options are ordered and appropriate specialist referrals are made. Furthermore, with limited number of knowledgeable clinicians available, individuals with IDD face barriers to timely access to care. These illustrations help highlight the need for educated clinicians in the field of IDD.

Reasons for Lack of Educated Healthcare Clinicians

Reasons for non-inclusion of content related to IDD curricula are varied. Lack of faculty expertise related to IDD is a concern. Moreover, minimal interest of faculty to teach this content may be present. Adding to the discourse is the necessity of faculty to focus content on areas needed to pass licensure exams for entering professional practice. Time, money, and effort to overhaul curricula may also be barriers.

However, professional healthcare disciplines support the inclusion of IDD content into curricula. The American Nurses Association is developing a white paper on the incorporation of the healthcare needs of persons with IDD into curricula.

The American Academy of Developmental Medicine and Dentistry (AADMD) also supports increased education for healthcare clinicians. In their purpose statement, the AADMD declares their existence, in part, is to assist in providing curriculum content to newly found professional schools and to prepare clinicians to provide quality care to persons with IDD.

Moreover, there may also be a bias among healthcare clinicians about providing care to persons with IDD, further reducing the number of providers available. Lack of formal training and familiarity with the population’s common health conditions, their methods of communicating, and nuances of their care, may be barriers fueling the bias some clinicians experience.

What is Needed

Nursing education must value and take responsibility for the specialty of IDD nursing. Curricula should align with current IDD nursing practice. Nursing program accreditation processes should include the requirement of IDD content into nursing curricula. This requirement could act as a catalyst to expand curricula in this direction. Nursing faculty with expertise in the field of disability should contribute to the integration of content into curricula. The addition of expert faculty into curricula development will ensure the inclusion of the nuances of care for this population. It will also allow experienced faculty to mentor those with less experience in disability. Schools of nursing should also support efforts of faculty to become certified in developmental disability nursing practice. Certification of faculty would enhance their expertise and help ensure current, best practice standards are integrated into future curricula.

Medical and dental education undergraduate programs should intentionally focus on the health needs of the intellectual and developmental population across the lifespan, recognizing the distinctions of care for this population. Medical and dental program accreditation processes should include the requirement of IDD content into medical and dental curricula. Creating easily navigated pathways for physicians and dentists to become specialists in the field of IDD is a necessity. Individuals with IDD deserve well-educated experts to help guide their healthcare. Encouraging physicians and dentists to acquire this specialization may help increase the number of clinicians available to provide this needed service.

Final Thoughts

Mandatory continuing education in intellectual and developmental healthcare should be developed to support clinicians. As practice in the field becomes more refined, steered by clinical research and extensive practice, on-going education is essential. Continuing education among healthcare clinicians in the field of IDD may increase clinicians’ comfort level and help reduce the bias some clinicians feel. Adding disability content into healthcare curricula and establishing continuing education mandates may help increase the number of qualified clinicians available to meet the healthcare needs of persons with IDD.

Kathy Auberry, DNP, RN, CDDN

Dr. Kathy Auberry is a registered nurse practicing in the field of intellectual and developmental disability for the past 25 years. She is an Assistant Professor of Nursing at Indiana University School of Nursing at IUPUC. Previously, Dr. Auberry served as the Director of Health Services and the Director of Operations for an organization supporting individuals with IDD experiencing complex health needs. She has a Doctor of Nursing Practice degree and a master’s degree in Nursing-Leadership in Health Care Systems with a concentration in education, as well as certification in developmental disabilities nursing.

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