Directions for the Future of Intellectual and Developmental Disabilities as a Nursing Specialty

Wendy M. Nehring, RN, PhD, FAAN, FAAMR

Abstract

Nurses have cared for persons with intellectual and developmental disabilities since the advent of professional nursing. With the current evolution of the health care delivery system, including reimbursement, the future of nurses specializing in this field has the potential to be greatly altered in the United States. In this article, the future of this specialty will be discussed by the major issues affecting this field: manpower; education; genetics and biomedical advances; practice guidelines; access, quality of care, and costs; technology; and research. Recommendations for nurses in the field and for those wishing to pursue this specialization will follow.

Keywords:

INTRODUCTION

Over the years, nurses have cared for persons with intellectual and developmental disabilities (I/DD) with great passion¹. It is a nursing specialty that is broad in context and content. Nurses provide care for persons with I/DD in maternal-newborn, medical-surgical, pediatric, psychiatric/mental health, and public health arenas, although curricular content in nursing programs is usually limited to discussion in a general pediatric course. Such care is holistic, not only involving health care, but also coordination and collaboration in accessing educational, employment, financial, housing, recreational, and social services systems. It is a nursing specialty that has been stigmatized, just as the population it serves has been. In fact, this nursing specialty was not recognized as such by the American Nurses Association in the United States until 1997.

The future of this often overlooked and important nursing specialization will be analyzed in this paper according to the following issues: manpower; education; genetics and biomedical advances; practice guidelines; access, quality of life, and cost; technology; and research. Recommendations for nursing practice will conclude.

MANPOWER

The shortage of nurses in the profession is tantamount to a crisis, which has been largely created by the retirement of older nurses, multiple career opportunities for women, and working conditions in hospitals². This is also true for nurses working in the field of I/DD.

For many years, nurses caring for this population worked in institutions. Since the 1970s with the advent of deinstitutionalization and the proliferation of small group homes and other community settings, the opportunities for nurses have changed. One area of difficulty for I/DD nurses who were beginning to work in the community was that they were expected to work independently, accessing resources, teaching caregivers to provide what had previously been nursing functions, and completing these responsibilities, without institutional administrative supports.

As community integration continues to be promoted in the states, all nurses are likely to see individuals with I/DD in community and specialized clinics. More so than ever, nurses require specialized knowledge and skills in order to adequately care for these individuals and their families. The current standards of practice for nurses in this specialty is recommended as an initial step to understanding the scope and standards of practice for this area of nursing^{3, 4}.

According to the publication Healthy People 2010, a satisfactory definition of disability is lacking⁵. Currently, the United States government broadly defines disability as a degree of limitation of daily activities. This definition generalizes individuals with any physical, sensory, or cognitive limitation whatsoever. Thus, the special needs of persons with I/DD are marginalized and often do not receive the attention they should. Dr. David Satcher’s (former Surgeon General of the United States) emphasis on the health care disparities present in persons with I/DD, which was the focus in Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation⁶, was a positive step, but its viability beyond the next few years is yet to be seen. The beginning efforts by Dr. Satcher and the long-term effects of his recommendations will affect the roles and care given by nurses to persons with I/DD.

Another manpower issue for this nursing specialty is the current level of practice of most nurses working in this field. There are much fewer graduate level nurses involved in the care and coordination of care of any subset of this population¹. This lack of nurses prepared at a higher level of education has also affected the numbers of nursing leaders in this field, especially in interdisciplinary circles. Since there are few advanced practice nurses in this field, there is a corresponding lack of publication and research being conducted by nurses. Recently, a few publications concerning physical health issues for persons with I/DD have been written by psychologists^{7, 8}. It is important to get this information to the public, but sad that these initial efforts were not written by nurses. A continued lack of scholarship will affect the future of this nursing specialty.

EDUCATION

Educational efforts to describe the content, roles, and opportunities for nurses in this specialty, as well as specific clinical experiences, must be available for this specialty to survive. Inclusion of the care of persons with I/DD did not fully enter the nursing curriculum until the 1950s, primarily in pediatric and public health courses. Prior to that, whatever content taught was mostly in psychiatric/mental health courses, because mental retardation was thought to be a subset of insanity or mental illness. In the early 1960s, with the advent of the Kennedy administration’s emphasis on the needs of persons with I/DD, educational funding did become available to nursing schools, and there was increased emphasis into the 1970s. Since then, the interest and funding has waned, and now most educational efforts are found in nursing programs at universities where a University Center for Excellence in Developmental Disabilities (UCEDD, formerly University Affiliated Programs) is present. The UCEDDs were originally legislated during the Kennedy administration to provide the public with exemplary interdisciplinary health care services across the continuum of care and research. Clinics for various conditions resulting in I/DD were set up and run by an interdisciplinary team. Education and fellowships also became available in a variety of disciplines in order to train educated health care practitioners and leaders for the future of this field¹.

Recently, a few efforts have begun that will give nursing faculty an alternative in providing nursing education in this area. First, Dr. Rose Mays of Indiana University in Indianapolis, Indiana, and other nursing leaders in this field, have developed a series of learning modules on the care of individuals with I/DD for the Internet. These modules are not yet in final form. Second, HealthSoft, Inc., a nursing and health software company, in collaboration with the Developmental Disabilities Nursing Association (DDNA), received federal funding to develop a web-based internet program on nursing and developmental disabilities. Information is presented through scenarios, points of interest, and pre- and post-tests. Members of the American Association on Mental Retardation (AAMR) are developing a core curriculum for nurses and health professionals specializing in this field. These examples will be instrumental in providing options for nurses and nursing faculty who are not specialists in this area to provide the content in an exciting array of formats.

Attention must also be given to preparing more nurses in this area at the graduate level. The Maternal Child Health Bureau funds the Leadership in Neurodevelopmental and Related Disabilities (LEND) Program at thirty-five UCEDDs across the country. The LEND programs provide interdisciplinary education to graduate students in health care professions, including nursing. Most importantly, nursing programs who reside at universities where a UCEDD is located must have a faculty member who is a liaison to this Center and provide a reference point for interested nursing students. Most of the UCEDDs offer interdisciplinary fellowships that provide exemplary and concentrated didactic and clinical instruction in this field with the LEND programs providing the most specialized education.

As nursing students are encouraged to participate in learning experiences involving persons with I/DD, they must also be encouraged to join nursing and interdisciplinary organizations that advocate and inform the public about the needs of persons with I/DD. These organizations should have a global perspective. The graying of nursing also extends to other disciplines concerned with this population, and so there is a critical need for younger, energetic, and thoughtful graduates to provide the health care, leadership, and active participation in these organizations.

GENETICS AND BIOMEDICAL ADVANCES

As the efforts of the Human Genome Project come to greater and broader fruition, nurses at all levels must be cognizant of its findings and their practical implications for the patients or clients that they care for. This involves reading the professional literature as well as the lay press to understand what the general public knows. This knowledge will have tremendous impact on the field of I/DD, and being “ahead of the curve” will assist health care professionals to provide the best care for their patients or clients. An important source of such information is the National Coalition for Health Professional Education in Genetics (NCHPEG; see www.nchpeg.org) and the International Society of Nurses in Genetics (ISONG; see www.isong.org).

Nurses may also specialize in this field by being a genetics nurse. This is a more specialized field in which the nurse is most often employed in a genetics clinic or a clinic specific to a particular disorder, such as phenylketonuria (PKU). Many genetic conditions include intellectual and developmental disabilities as part of the symptomatology, and knowledge of these disorders or conditions are necessary to provide the best holistic care.

Presently, with the threat of war, the possibility of bioterrorism, and the presence of environmental hazards, emerging developmental disabilities could result. Keeping abreast of any medical fallout from such weapons is necessary to provide early and effective interventions.

The prevention of primary intellectual and developmental disabilities and secondary conditions is important to maintain the health of the public. The advent of the use of folic acid in women of childbearing years has prevented many instances of neural tube defects. The knowledge of many secondary conditions and their likelihood of affecting persons with specific disorders, such as contractures in persons with cerebral palsy, has also enhanced health status and quality of life. Furthermore, the increased use of tandem mass spectrometry has enhanced the number of genetic conditions that can be identified, and in many cases, treated early for optimal developmental and health outcomes. It is imperative that nurses specializing in I/DD be knowledgeable of new advances in this area in order to best provide education and care to this population.

PRACTICE GUIDELINES

A specific effort to standardize care for particular conditions and/or interventions is through practice guidelines. In the United States, the Agency for Healthcare and Research Quality (AHRQ) has taken the lead in this effort. Other organizations, such as the American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) have also defined practice guidelines for specific conditions and interventions. Very few practice guidelines are available for specific conditions resulting in intellectual and developmental disabilities and/or interventions for this population (e.g., Down syndrome)^{9, 10}. The American Academy of Pediatrics also publishes health care guidelines for individuals with a number of other genetic conditions (see http://divis17.ped-gen.uiowa.edu/genetics/aapstuff.htm). Additional condition-specific guidelines need to be developed and nurses need to be involved in the writing of such guidelines.

There are no guidelines concerning the health promotion or clinical and preventive services specific to the health concerns of persons with I/DD in general. The United States Public Health Services (USPHS) and the United States Preventive Services Task Force (see http://cpmcnet.Columbia.edu/texts/gcps/gcps0000.html) provide general guidelines for the public’s health, but there is no specific information pertaining to persons with I/DD. There is a critical need for the development of such guidelines, taking into account individual differences. Before this can be done, efforts must be made to analyze the current literature and make recommendations based on this foundation. The Health Promotion and Prevention Committee of AAMR, with nurses included in its membership, are planning a national conference in 2004 to present such an analysis of the health promotion literature as it relates to this population.

ACCESS, QUALITY OF LIFE, AND COSTS

Access to appropriate and comprehensive health care is not guaranteed to persons with I/DD. There are many reasons why this is true, among them geographical distance, availability of qualified health care providers (including physicians, nurses, dentists, and mental health professionals), Medicaid status, and availability of supplementary social and educational services¹¹. Health disparities for persons with I/DD based on cultural differences mirror the same disparities found in the general public. Often the best and most comprehensive care is provided through specialized clinics for persons with I/DD. Integrated care is often preferred, but for the reasons listed above, this is often not possible.

In addition to access, the availability of quality health care is also a concern. Health care provider education at both the preservice and inservice levels is lacking⁶, and nursing must be cognizant of this deficit. Adequate case management is also needed for optimal care, but this is often missing from state managed-care plans that persons with I/DD must enroll in order to receive SSI or Medicaid health benefits. A limitation of managed care is the need to prove “medical necessity,” rather than functional value¹². This mandate has prohibited much needed therapies and equipment.

Adequate public health opportunities for health promotion activities are further missing for persons with I/DD. Also lacking is good and adequate transitional care, especially from childhood to adulthood, around age 21 years, and later, for gerontological care. What must be considered is that some conditions that cause I/DD, such as Down syndrome, are characterized by premature aging, so that guidelines for gerontological care would need to begin earlier in life. All in all, our health systems of care must be revised for adequate health care across the lifespan for persons with I/DD.

TECHNOLOGY

In the past several years, many advances in technology have assisted persons with I/DD. These changes include computer-assisted learning devices, communication equipment, more sophisticated wheelchairs, and adaptive equipment for performing activities of daily living. Many more changes are predicted for the next few years. With such rapidly changing technological advances, nurses must be able understand what this technology can be used for and how it can best assist a person with I/DD. Perhaps a nurse can be the inventor or designer of some technology in the future. Certainly collaborations with technology specialists and software designers are possible.

RESEARCH

As mentioned earlier, it is imperative that nurses participate and lead research efforts to enhance the health care of persons with I/DD. A few ideas for future research are presented. Detailed information is needed on practice guidelines for condition-specific concerns and pharmacological and/or treatment interventions. Women’s and men’s health care needs across the lifespan are needed for condition-specific and generic populations of persons with I/DD. We need to know how different cultural and ethnic backgrounds influence health status and quality of life across the lifespan. It will be important to understand the trajectory of childhood conditions resulting in I/DD across the lifespan. Such studies should be developmentally based. Nurses can further research health care systems and their efficacy for individuals of any age with I/DD and their families.

CONCLUSION

In summary, the future of nurses specializing in I/DD is dependent on their willingness to change and adapt to current health care systems and to advance the profession through advanced education, increased scholarship, and the mentoring of future leaders. Nurses specializing in this field have always provided care and education to persons with I/DD and their families with great passion. It will be this passion that will lead this nursing specialty in the coming decades.