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IDD Nursing: The Challenges of Role Ambiguity and Diverse Settings

Intellectual and Developmental Disability (IDD) Nursing Practice has evolved as a specialty nursing practice over the last few decades. However, the IDD nursing role is still ambiguously defined, due to the transition to community-based services, varied legislative requirements at the state level, and diverse nurse practice acts.

What does an IDD Nurse do?

Nurses in the field of IDD provide services that include consulting, administration, health promotion, assessment and referral, case management, medication administration, advocacy, care plan and risk plan development, and direct support staff training. However, there does not appear to be a clearly defined IDD nursing role consistent across the United States.

Early in my career, I took a position as the first full-time nurse in a non-profit organization that supported individuals with IDD and complex medical conditions. I immediately knew this was my true calling in nursing. However, I was unprepared for the lack of clarity in my role—not only within my own organization but also in the broader field of nursing.

When questioned about my role, I was often at a loss to explain the complexity and necessity of my nursing practice. This began a two-decades-long quest to better define the field of IDD nursing and assist in refining this area of nursing practice.

State by state variations of IDD nursing

Nursing practice is regulated at the state level. State Boards of Nursing develop standards for each level of nursing practice, from licensed practical nurses (LPNs) to registered nurses (RNs) to advanced practice registered nurses, each with their own specific nurse practice act. Nurse practice acts define the scope of practice for each type of nursing practice in a given state. There are varied nurse practice acts across the United States at every level of nursing care, and they encompass all fields of nursing, including IDD.

The primary purpose of a nurse practice act is to protect the public and ensure safe nursing practice (National Council of State Boards of Nursing, 2019). In some instances, State Boards of Nursing may create position statements to clarify issues such as delegation, abandonment, and other important practice issues in nursing. These position statements do not make new law; rather, they infer the law and give guidelines for practice that are consistent with the state rule.

In the field of IDD there are specific concerns not always clarified through legislation, nurse practice acts, or position statements. In my years speaking with IDD nurses across the United States, two major areas of concern are consistently at the forefront in disability nursing:

  • LPN Nurse Practice Act versus RN Nurse Practice Act
  • Lack of delegation authority or unspecified delegation responsibilities within Nurse Practice Acts and regulatory guidelines governing IDD agencies

LPN versus RN nurse practice acts in IDD nursing

The field of IDD nursing relies on both licensed practical nurses and registered nurses to support persons with IDD. Both levels of nursing have expertise and add value to nursing care. However, there are distinct differences in their scopes of practice across the United States. There is also a distinction between educations that should not be overlooked.

Registered nurses complete an associate or baccalaureate degree in nursing. The baccalaureate degree (Bachelor of Science in Nursing) curriculum provides a liberal education that includes in-depth sciences courses; management and leadership experiences; policy, finance and regulatory requirements; and a focus on evidence-based practice and population health. This degree prepares the RN to provide care to critically ill patients, develop and implement complex health care plans, critically think through difficult situations, manage a caseload of patients, and direct a healthcare team to provide care.

An RN who receives an associate degree has similar clinical experiences and health science courses but may not receive the broad liberal education or take courses related to management practices, leadership, or population health. Therefore, associate-prepared RNs may work under the supervision of a baccalaureate-prepared RN in many states. Associate degree nurses have strong clinical knowledge and direct care experience that is important when providing care for those with IDD.

LPNs are commonly referred to as practical nurses due to their focus on direct care duties. LPNs attain an entry level nursing license and not a degree. Most LPN programs provide basic anatomy and physiology courses and focus on nursing tasks such as passing medications and administering injections. While LPN duties vary from state to state, most LPNs are required to practice under the supervision of a registered nurse. LPNs provide a valuable service to individuals with IDD due to their vast experience with patients and task-related skills.

These differences become problematic when states regulate IDD service and do not recognize the field of IDD nursing as a unique area of nursing. This oversight in some states may treat all levels of nurse licensure as the same—in other words, “a nurse is a nurse.” It can also be challenging when the administration of agencies supporting persons with IDD do not understand the difference in roles, education and expertise between licensed practical and registered nurses. Depending on the state and agency, nurses may be practicing outside their individual LPN or RN nurse practice act.

Unspecified delegation of responsibilities

Direct support professionals (DSP) are essential and valuable members of the healthcare team in IDD. Their commitment and compassion for the people they support cannot be overstated. However, it is important to remember that as members of the healthcare team, DSPs should practice within the boundaries of their education and training when it comes to health-related duties.

Oftentimes, DSPs are required or allowed to provide healthcare duties that in other healthcare fields are completed only by a licensed nurse or by someone under the direct authoritative supervision of a registered nurse. However, in the field of IDD, the IDD nurse must often “delegate” many nursing tasks. Delegation is the process of transferring the responsibility and authority for performing a task to someone else. However, the delegator, the nurse in this case, remains accountable for the delegated task.

While nurses most often are responsible for training DSPs on medication administration and other healthcare tasks, it is uncommon for nurses to directly supervise DSPs. Without supervisory authority, IDD nurses have little opportunity to intervene when necessary to ensure safe and appropriate care, but they can still be held accountable for the delegated task. This inability to supervise directly can also lead to role confusion and frustration, and it has the potential to put the nurse’s license in jeopardy.

Diverse settings

IDD nursing practice extends across all levels of care and care settings. People with IDD receive care in traditional healthcare settings such as hospitals, long-term care facilities and clinics. However, they may also live and receive nursing care in community-based settings such as group homes and smaller congregate settings. The different settings are regulated through various state and federal legislation. At times IDD nurses may provide care through one provider agency but within multiple types of community settings. Varied regulations and provider expectations may increase the ambiguity of the nurses’ role. As mentioned previously, administrators in different provider settings may not understand or appreciate restrictions placed on nurses through their Nurse Practice Acts, creating diverse expectations and mixed role definitions for the IDD nurse.

What is needed

IDD nurses and the individuals they support deserve a synthesized approach to nursing care that addresses role ambiguity across settings.

  • There is a need for consistency across states regarding the delivery of nursing care for this population.
  • Clearly defined Nurse Practice Acts addressing the distinctions between RN, LPN, and DSP roles in IDD is needed.
  • It is suggested that IDD nurses have distinctly outlined delegation language allowing healthcare supervision of unlicensed personnel working in community settings.
  • Education of service providers on the role of the IDD nurse that includes specific job descriptions with clearly defined roles related to delegation of tasks, supervision of DSPs, and detailed nursing responsibilities is desirable.
  • Research is needed to thoroughly explore and refine the role of the IDD nurse in order to better frame IDD nursing practice.

Challenges for Nurses in IDD: Practice Settings and Role Ambiguity

The role and expections of nurses working in the IDD field vary depending on the setting. Dr. Kathy Auberry explores the role ambiguity IDD nurses face, how they work within that ambiguity, and how this lack of clarity affects the care of individuals with IDD.

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