Committing to a vulnerable population

Attainment of good health is an important goal for all individuals. For people with intellectual disabilities (ID) this may not be an easy task.  According to the World Health Organization, up to three percent or almost 200 million people of the world’s population have intellectual disabilities. With increased longevity, deinstitutionalization and rising incidence of autism spectrum disorder, the number of people with intellectual disabilities is expected to grow to several million by 2030 (World Health Organization, 2011).  

Concerns regarding the increase in this population include the lack of health care data available for those with ID which is critical for future health planning. A major cause of this problem is once these individuals leave the school systems they disappear from national data sets.  Furthermore, most of the disability research has focused on individuals with physical disabilities and so there is limited information about the current and future health care needs for those with ID.

Social determinants of health further impact the health care needs of the intellectually disabled which include the circumstances in which people are born, live, work, and age as well as the systems put in place to deal with illness. These situations are in turn shaped by a wider set of forces: economics, social policies and politics.  Consequently, social determinants are the major contributing factors to poorer health outcomes for those with ID as compared to the rest of the population. It has been reported that individuals with intellectual and developmental disabilities face health care disparities and inequities in four areas: access, knowledge, communication and quality. These disparities place those with ID at high risk for a variety of health issues including lack of routine screenings, limited access to quality care and poor management of chronic illness.

Lack of education of health care providers is another major barrier to the delivery of services for the intellectually disabled.  Nurses undoubtedly represent the largest number of health care professionals and are faced with the responsibility of providing education and care for those with ID. Unfortunately, they must accomplish this task with little or no education about the needs of this population. Nurses must understand the distinctive health care needs of this population and know how to advocate for the individuals, participate in research efforts, address barriers to health care, provide education to caregivers and collaborate with interdisciplinary providers.  For nurse practitioners, this is an opportunity to serve as primary care providers in community programs where clients with ID need care on a daily basis. This would address several barriers associated with access to care and provide opportunities for health maintenance, restoration and promotion on a consistent basis.

While these are immense responsibilities for nurses, programs of nursing education regrettably have not incorporated the aspects of care for this population in their course of studies.  Since there is a current public health emphasis on social determinants of health, health disparities, and vulnerable populations, the health care needs of those with are beginning to receive greater recognition.

Villanova University College of Nursing, being committed to excellence, community service and guided by the Augustinian framework, is ideally suited to undertake the challenges this vulnerable population encounters.  In spring 2010, under the direction of Associate Professor Suzanne Zamerowski PhD, RN, initiatives were undertaken to address health care of the population with ID as a component of the Villanova University nursing baccalaureate program.  

An affiliation began with Philadelphia Coordinated Health Care (PCHC), whose mission is to enhance access to community health care through education, public health outreach, advocacy and empowerment for those with ID.  In collaboration with the Director of Nursing, Patricia Graves, BSN, RN-BC, CDDN, Villanova students developed and implemented health promotion projects targeted to the health care needs of those with ID.  Students developed webinars for caregivers, created diabetic education materials for clients and organized a community health fair. Students also attended professional meetings of the Regional Network of Nurses in Developmental Disabilities, helping to raise awareness among students of their future professional role.

Clinical opportunities continued to expand in 2012 with an affiliation with BARC Developmental Services in Warminster, Pa. BARC provides services such as vocational assessment, training, job placement, and retirement activities for nearly 250 adults with intellectual disabilities and autism, age 21 and older. The program also operates an Adult Training Facility (ATF) and Disabled Senior Retirement Program (DSRP) providing social and recreational activities for individuals who are unable, or no longer want to work, but wish to remain active in a therapeutic day program.  During this experience students provided both staff and client education including diabetic education modules, a thirty-page manual about nutrition, and other educational programs related to heart health, healthy lifestyle, hygiene, and  stress reduction. Though challenging, the Villanova nursing students were creative and flexible in integrating teaching strategies appropriate to the clients’ cognitive levels. Most importantly, students left with the appreciation of the imperative for nursing advocacy of this population.

Future plans for spring 2013 are to continue collaboration with BARC Services to develop a series of lectures that address common secondary health conditions in those with ID. Dr. Zamerowski and Director Graves are continuing to collaborate regarding the development of health data surveys to document the incidence of secondary health conditions in this population.  Dr. Zamerowski continues to serve on the Bucks County Board of Mental Health and Intellectual Disability as a nursing advocate for this deserving population.  It is the hope that Villanova University College of Nursing will continue to be pioneers in addressing the health care needs of the intellectually disabled.