Standards of Professional Nursing Practice for Intellectual and Developmental Disabilities (IDD) Nurses
Significance of Standards for IDD Nurses
The Standards of Professional Nursing Practice are authoritative statements of the duties that all registered nurses, regardless of role, population, or specialty, are expected to perform competently. The standards published herein may be utilized as evidence of the standard of care, with the understanding that application of the standards is context dependent. The standards are subject to change with the dynamics of the nursing profession, as new patterns of professional practice are developed and accepted by the nursing profession and the public. In addition, specific conditions and clinical circumstances may also affect the application of the standards at a given time (e.g., during a natural disaster). The standards are subject to formal, periodic review and revision.
The competencies that accompany each standard may be evidence of compliance with the corresponding standard. The list of competencies is not exhaustive. Whether a particular standard or competency applies depends upon the circumstances.
These standards apply to both the registered nurse and APRN in IDD. They apply to the nursing care of persons with IDD of all ages, cultures, socioeconomic backgrounds, and medical diagnoses. Furthermore, these standards apply to any health care, education, residential, or community setting where healthcare consumers with IDD might be. The competencies have been developed by the authors to represent quality practice and performance in the nursing care of healthcare consumers with IDD.
Standards of Practice for IDD Nurses
Standard 1. Assessment
The registered nurse who specializes in IDD collects comprehensive data pertinent to the healthcare consumer’s health and/or the situation.
COMPETENCIES
The registered nurse:
Collects comprehensive data including but not limited to physical, functional, psychosocial, emotional, cognitive, sexual, cultural, age-related, environmental, spiritual/transpersonal, and economic assessments in a systematic and ongoing process while honoring the uniqueness of the person. This may involve observation, interviewing, and the use of screening and assessment tools. Diagnostic tests may be used as part of the assessment process if the nurse has specific training in that area (e.g., developmental diagnostic testing).
Uses analytical models and problem-solving tools that are appropriate for healthcare consumers with IDD.
Elicits the values, preferences, expressed needs, and knowledge of the healthcare situation of the consumer with IDD and family/legal guardians.
Involves the healthcare consumer with IDD, family/legal guardians, other healthcare and interdisciplinary professionals and paraprofessionals, and the work and home environment, as appropriate, in holistic data collection.
Identifies barriers (e.g., cognitive, physical, psychosocial, literacy, financial, cultural) to effective communication and makes appropriate adaptations.
Recognizes the impact of personal attitudes, values, and beliefs.
Assesses family dynamics and impact on health and wellness of the consumer with IDD.
Prioritizes data collection based on the immediate condition or the anticipated needs of the healthcare consumer with IDD or situation.
Uses appropriate evidence-based assessment techniques, instruments, and tools in collecting pertinent data, including, but not limited to, genetic studies, special serum screening (e.g., cystic fibrosis, Tay-Sachs, sickle-cell disease), nutritional needs and metabolic functioning, and any other condition-specific data measures.
Synthesizes all data, information, and knowledge from the consumer with IDD, family members/legal guardians, the interdisciplinary team, and the individual’s environment that is relevant to the situation to identify patterns and variances. This may involve data and information from the school, work site, and/or residential setting.
Applies ethical, legal, and privacy guidelines and policies to the collection, maintenance, use, and dissemination of data and information.
Recognizes that healthcare consumers with IDD have authority over their own health by honoring their care preferences. As legally appropriate, a guardian may be involved in identifying and expressing those preferences.
Documents relevant data in a retrievable format.
ADDITIONAL COMPETENCIES FOR THE APRN WHO SPECIALIZES IN IDD
The advanced practice registered nurse:
Initiates and interprets diagnostic tests and procedures relevant to the current status of the healthcare consumer with IDD.
Assesses the effect of interactions among individuals, family/legal guardians, community, and social systems on health and illness.
Standard 2. Diagnosis
The registered nurse who specializes in IDD analyzes the assessment data to determine the diagnoses or issues.
COMPETENCIES
The registered nurse:
Derives the diagnoses or issues from assessment data.
Validates the diagnoses or issues in partnership with the healthcare consumer with IDD, family/legal guardians, and members of the interdisciplinary team when possible and appropriate.
Identifies actual or potential risks to the health and safety of the consumer with IDD or barriers to health, which may include but are not limited to interpersonal, systematic, or environmental circumstances.
Uses standardized classification systems and clinical decision support tools, when available, in identifying diagnoses.
Documents diagnoses or issues in a manner that facilitates the determination of the expected outcomes and plan.
ADDITIONAL COMPETENCIES FOR THE APRN WHO SPECIALIZES IN IDD
The advanced practice registered nurse:
Systematically compares and contrasts the history and clinical findings with normal and abnormal variations and developmental events in formulating differential diagnoses, including specific values, ranges, and outcomes for a specific diagnosis (e.g., Down syndrome).
Synthesizes complex data and information (including developmental and assessment) obtained during interview, examination, and diagnostic processes when identifying diagnoses.
Serves as a consultant to the registered nurse and other staff in developing and maintaining competence in the diagnostic process.
Analyzes accessibility and availability of services, barriers to adequate health care, specific populations at high risk, health promotion needs for specific populations, and environmental hazards that may affect health.
Standard 3. Outcomes Identification
The registered nurse who specializes in IDD identifies expected outcomes for a plan individualized to the healthcare consumer with IDD or the situation.
COMPETENCIES
The registered nurse:
Partners with the healthcare consumer with IDD, family/legal guardians, members of the interprofessional team, and others in formulating expected outcomes when possible and appropriate.
Derives culturally appropriate expected outcomes from the diagnoses.
Considers associated risks, benefits, costs, current scientific evidence, expected trajectory of the condition, and clinical expertise when formulating expected outcomes.
Defines expected outcomes in terms of the values of the healthcare consumer with IDD; the values of family members/legal guardians when appropriate; ethical and legal considerations; environment, culture, or situation with such consideration as associated risks; benefits and costs; and current scientific, ethical, and/or legal evidence.
Develops expected outcomes that facilitate continuity of care and person-centered care as appropriate.
Modifies expected outcomes according to changes in the status (i.e., health, social, living, economic, and/or legal) of the healthcare consumer with IDD or evaluation of the situation.
Documents expected outcomes as measurable goals that include an estimated time to attain expected outcomes.
ADDITIONAL COMPETENCIES FOR THE APRN WHO SPECIALIZES IN IDD
The advanced practice registered nurse:
Identifies expected outcomes that incorporate scientific evidence and are achievable through implementation of evidence-based practices.
Identifies expected outcomes that incorporate cost and clinical effectiveness, legal and ethical boundaries, satisfaction and understanding, and consistency and continuity among the individual with IDD, family/legal guardians, healthcare providers, and members of the interprofessional team.
Supports the use of clinical guidelines linked to positive patient outcomes.
Differentiates outcomes that require care process interventions from those that require system-level interventions.
Standard 4. Planning
The registered nurse who specializes in IDD develops a plan that prescribes strategies and alternatives to attain expected outcomes.
COMPETENCIES
The registered nurse:
Develops an individualized plan that is person-centered when appropriate, in partnership with the person, family/legal guardians, and others considering the person’s characteristics or situation, including but not limited to values, beliefs, spiritual and health practices, preferences, choices, chronological age and developmental level, coping style, culture, available technology, and the least restrictive environment.
Establishes the plan priorities in collaboration with the healthcare consumer with IDD, family/legal guardians, others, and the interprofessional team as appropriate.
Includes strategies in the plan that address each of the identified diagnoses or issues. These strategies may include but are not limited to strategies for:
Promotion and restoration of health;
Prevention of illness, injury, and disease;
Alleviation of suffering; and
Supportive care for those who are dying.
Includes strategies for health and wholeness across the lifespan.
Provides for continuity in the plan.
Incorporates an implementation pathway or timeline in the plan.
Considers the economic impact of the plan on the healthcare consumer with IDD, family/legal guardians, caregivers, or other affected parties.
Integrates current scientific evidence, trends, and research affecting comprehensive care of healthcare consumers of all ages with IDD into the planning process.
Uses the plan to provide direction to family members/legal guardians and other members of the healthcare and interprofessional team.
Investigates practice settings and safe space and time for the nurse and the healthcare consumer with IDD to explore suggested, potential, and alternative options.
Defines the plan to reflect current statutes, rules and regulations, and standards.
Modifies the plan according to the ongoing assessment of the healthcare consumer’s response and other outcome indicators.
Documents the plan in a manner that uses standardized, person-first language and recognized terminology.
ADDITIONAL COMPETENCIES FOR THE APRN WHO SPECIALIZES IN IDD
The advanced practice registered nurse:
Identifies assessment strategies, screening and diagnostic strategies, and therapeutic interventions that reflect current evidence, including data, research, literature, and expert clinical knowledge.
Selects or designs strategies to meet the multifaceted and complex needs of healthcare consumers with IDD.
Includes in the plan a synthesis of the values and beliefs of the healthcare consumer with IDD regarding nursing, medical, social, and educational therapies.
Leads the design and development of interprofessional processes to address the identified diagnosis, situation, or issue.
Actively participates in the development and continuous improvement of organizational systems that support the planning process.
Supports the integration of clinical, human, and financial resources to enhance and complete the decision-making and evaluation processes.
Serves as a consultant to the registered nurse in plan development, priority setting, cost-benefit analysis, and identification of resources, as needed.
In collaboration with the registered nurse and other members of the interprofessional team, and in partnership with the community, derives community-focused plans that are based on identified problems, conditions, or needs and that build on the strengths of the community.
Develops plans that ensure continuity of care and minimize or eliminate gaps and duplication of services.
Standard 5. Implementation
The registered nurse who specializes in IDD implements the identified plan.
COMPETENCIES
The registered nurse:
Partners with the healthcare consumer with IDD, his or her family/legal guardians, significant others, and caregivers as appropriate to implement the plan in a safe, realistic, and timely manner.
Demonstrates caring behaviors toward healthcare consumers with IDD, significant others, and groups of people receiving care.
Utilizes technology to measure, record, and retrieve healthcare consumer data, implement the nursing process, and enhance nursing practice.
Utilizes evidence-based interventions and treatments specific to the diagnosis or problem.
Provides holistic care that addresses the needs of diverse populations across the lifespan.
Advocates for health care that is sensitive to the needs of healthcare consumers with IDD, with particular emphasis on the needs of diverse populations.
Applies appropriate knowledge of major health problems and cultural diversity in implementing the plan of care.
Applies available healthcare technologies to maximize access and optimize outcomes for healthcare consumers with IDD.
Utilizes community resources and systems to implement the plan.
Collaborates with nursing colleagues and other healthcare providers from diverse backgrounds to implement and integrate the plan.
Accommodates different styles of communication used by healthcare consumers with IDD, families/legal guardians, members of the interdisciplinary team, and other healthcare providers.
Integrates traditional and complementary healthcare practices as appropriate.
Implements the plan in a timely manner in accordance with patient safety goals.
Promotes the capacity of the healthcare consumer with IDD to achieve the optimal level of participation and problem-solving.
Documents implementation of and any modifications, including changes or omissions, to the identified plan.
ADDITIONAL COMPETENCIES FOR THE APRN WHO SPECIALIZES IN IDD
The advanced practice registered nurse:
Facilitates utilization of systems, organizations, and community resources to implement the plan.
Supports collaboration with nursing colleagues and other members of the interprofessional team to implement the plan.
Incorporates new knowledge and strategies to initiate change in nursing care practices if desired outcomes are not achieved.
Assumes responsibility for safe and efficient implementation of the plan.
Uses advanced communication skills to promote relationships between nurses and healthcare consumers with IDD, to provide a context for open communication about the healthcare consumer’s experiences, and to improve healthcare consumer outcomes.
Actively participates in the development and continuous improvement of systems that support implementation of the plan.
Implements the plan using principles and concepts of project or systems management.
Fosters organizational systems that support implementation of the plan.
Standard 5A. Coordination of Care
The registered nurse who specializes in IDD coordinates care delivery.
COMPETENCIES
The registered nurse:
Organizes the components of the healthcare plan.
Manages the care for a healthcare consumer with IDD to maximize independence and quality of life.
Assists the healthcare consumer with IDD and the family/legal guardians, as appropriate, to identify options for alternative care.
Communicates with the healthcare consumer with IDD, family/legal guardians, and system during transitions in care.
Advocates for the delivery of dignified and humane care by the interprofessional team.
Documents the coordination of care.
Makes referrals to other disciplines as needed.
Supervises and/or provides direction to ancillary and unlicensed personnel who provide health care to healthcare consumers with IDD and their families/legal guardians.
Keeps the healthcare consumer with IDD and family/legal guardians (and direct care support professionals, when present) informed about the health status of the consumer.
Keeps the healthcare consumer and the family/legal guardians informed about healthcare resources that are available.
Employs strategies to promote health in home and community settings that are safe and utilize the least restrictive alternatives.
ADDITIONAL COMPETENCIES FOR THE APRN WHO SPECIALIZES IN IDD
The advanced practice registered nurse:
Provides leadership in the coordination of interprofessional health care for integrated delivery of healthcare services for the healthcare consumer with IDD.
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