The term care has long been associated with the profession of nursing; in fact, nursing care is what we do! This is what the public perceives as the role of the nurse. The American Nurses Association (2012) recognizes the primary role of the nurse as much more than simply delivering care to patients, and views the primary role of the nurse as a "care coordinator." Care coordination involves ensuring that a patient's needs for health services and information are communicated and delivered effectively by the healthcare team over time and in all settings pertinent to the patient (American Nurses Association, 2012). Intellectually and developmentally disabled (I/DD) adults are living longer and are facing the same challenges associated with aging that other elderly face. In particular, this population is often at increased risk for osteoporosis related to immobility, and therefore, is prone to pathological fractures requiring treatment in the acute care setting (Jasien, Daimon, Maudsley, Shapiro, & Martin, 2012). Although the orthopaedic nurse is an expert when caring for the orthopaedic patient, caring for the I/DD patient may be frustrating and difficult to care for because of communication barriers and a general lack of comfort with this population (Fisher, Frazer, Hasson, & Orkin, 2012). The role of the nurse as a care coordinator for the I/DD adult is essential in ensuring that the I/DD patient's needs for health services and information are communicated and delivered effectively to the healthcare team in the orthopaedic setting.
The nurse's role in ensuring high-quality patient care is especially important in specialized care settings that involve vulnerable populations (Cipriano, 2012). The role of a care coordinator for the I/DD adult in the residential group home setting is even more challenging. In this setting, residents receive care from unlicensed assistive personnel (UAP) with a minimum educational requirement of a high school diploma. Residents have varied and complex physical and mental illnesses. Often, healthcare providers, including nurses in the acute care setting, are not familiar with the residential group home setting or with the special needs of this population. These factors, as well as funding issues, make for a "perfect storm" for care coordination. The Oxford Dictionaries (2013) describes a perfect storm as a bad situation caused by a combined effect of unfavorable circumstances. To function effectively as care coordinators, nurses must be aware of the circumstances surrounding the patient that may contribute to favorable and unfavorable situations for the patient.
A Perfect Storm
Betty is a 66-year-old woman living in an Intermediate Care Facility for the Developmentally Disabled (ICF-DD), also known as a residential group home setting. Besides being elderly, Betty is challenged both mentally and physically; she is classified as one who has I/DD. From birth, Betty has suffered with spastic cerebral palsy as well as visual and verbal communication deficits. Because of her age, gender, and state of immobility, she suffers from osteoporosis. These factors predisposed Betty to a fracture of the right hip, which occurred without known injury. Upon discovery of the fracture, Betty was transported to the local community hospital where a hemiarthroplasty with a posterior approach was performed. With this type of surgical repair, there is an increased risk of postoperative dislocation within the first 3 months; therefore, it is important to follow the set precautions of no hip flexion greater than 90[masculine ordinal indicator], no adduction past neutral, and no internal rotation beyond neutral (Beagan, 2010).
Betty's developmental disability and communication deficits resulted in care coordination obstacles both during her in-patient stay and during discharge planning. Discharge planning was especially challenging because of a knowledge deficit among acute care nurses in the acute care setting and other members of the healthcare team regarding the method of care delivery in the residential group home setting.
Definition of Terms
The Ohio Department of Developmental Disability describes I/DD as conditions that may impair physical or intellectual/cognitive functions or behavior and occurs before a person is aged 22 years. According to the National Council on Disability (2013), a group home is a home for persons with developmental disabilities and referred to as an ICF-DD. This is a Medicaid-funded residential facility that teaches living skills to help people live in less restrictive environments. Betty is a resident in an ICF-DD facility with five other residents.
Barriers to Care Coordination
Barriers to care coordination must be identified to be resolved. Barriers are identified in the residential setting as well as the acute care setting. The role of the nurse as a care coordinator is essential for bridging the knowledge gap and ensuring smooth transitions among care settings.
Barriers Associated With the Residential Setting
Most healthcare providers are not familiar with the method of care delivery in the residential setting. Regulation of the delivery of care in residential settings varies from state to state. In Ohio, direct care in the ICF-DD setting is delivered by UAP. The minimum educational requirement for the UAP is a high school diploma or the equivalent. Nurses are not required to be on site 24 hours per day; however, a registered nurse must be on call and within reach through the use of telecommunication 24 hours per day (Ohio Department of Developmental Disability, 2013). The UAP are not required to have specialized training prior to employment. Once employed, they may obtain delegated certification to administer oral, topical, and rectal medications as well as health-related tasks through a 14-hour course developed by the state of Ohio. The nurse may then delegate administration of oral, topical, and rectal medications, vital signs, first aid, and other health-related tasks to the UAP. Delegating the administration of Schedule II medications is prohibited in this setting. Administration of insulin and medications via gastronomy tubes is permitted with advanced training. The delegating nurse is many times also fulfilling the role of care coordinator. This is a demanding and stressful role for the nurse who often does not have peer and professional support.
The I/DD residents have varied and complex physical and mental illnesses. Many of the residents have significant behavioral problems, which result in lack of cooperation when receiving care. These same behavioral issues require specialized knowledge on behalf of direct care staff to maintain safety of all residents. This contributes to poor staff retention due to frustration and safety concerns. Frequent changes in staff often result in increased anxiety among the residents, which is then expressed through uncooperative and even aggressive behavior. Poor staff retention also results in knowledge deficits regarding the individual needs of the residents, negatively affecting continuity of care.
Barriers Associated With Acute Care Setting
Among the barriers encountered with healthcare providers in the acute care setting is the lack of knowledge regarding this population and their special needs. Contributing factors identified by nurses are the lack of education and clinical experience with this population in formal nursing education programs (Fisher et al., 2012). The unpredictable behaviors and communication deficits of the I/DD patient affect the nurses' comfort level, which negatively impacts the quality of healthcare provided (Fisher et al., 2012). Another barrier encountered in the acute care setting is time. Caring for persons with I/DD can become time intensive for the nurse who is already overburdened with patient assignments. All of these factors contribute to the frustration experienced by the acute care nurse who provides care for the patient with I/DD.
Challenges Experienced by the I/DD Care Coordinator
The knowledge gap on the part of healthcare providers regarding the special healthcare needs and living arrangements of the I/DD population is a continuing challenge for the care coordinator. With each visit to a healthcare provider, whether in the private office setting or in the acute care setting, special accommodations must be made to meet the patient's needs. These needs may include but are not limited to transportation, communication, and mobility. Often, I/DD residents are accompanied on these visits by a UAP. This can cause communication gaps between healthcare providers and the care coordinator, which often negatively impacts continuity of care. The care coordinator is continuously challenged to find ways to circumvent these gaps in care.
Often, the I/DD care coordinator possesses a knowledge deficit as well. Nurses working with this population rarely have formal education or training to prepare them for providing care for these individuals (Fisher et al., 2012). Because of factors such as poor retention, lack of peer support in the community setting, and lack of mentors, care coordinators often learn "on the job."
Residential care settings are federally funded and administered by individual states; therefore, the care provided is also regulated by federal and state agencies, specifically Medicaid and Medicare (National Council on Disability, 2012). While necessary to ensure that the residents have safe, effective care, it is at the same time challenging to stay up-to-date and in compliance with the continually changing regulations. This may create confusion among healthcare providers who are unfamiliar with these regulations. The discharge planning process is especially challenging.
As in the case of Betty, the acute care nursing staff, case managers, and social workers did not understand why Betty could not be discharged home following surgical repair of her hip. Coordinating the communication among these care providers was challenging. Contributing to the confusion was the perception of the residential living setting and the method of care delivery. Meeting the special postoperative orthopaedic positioning and pain control needs of Betty made it necessary to provide skilled care upon discharge from the acute care setting. It was the general impression among the acute care staff that the residential group home could provide the same care as a skilled nursing facility. The acute care staff was generally unaware that among other necessary treatments and therapies needed for Betty was the inability to administer Schedule II pain medication.
It was during discharge planning the "Perfect Storm" occurred. While Betty received the care she needed as an inpatient, it was extremely challenging for all involved to coordinate her discharge to a facility that could provide the level of care she needed until she was stable enough to return to the residential group home setting. This attention to care coordination at the time of discharge is especially important to avoid patient complications and hospital readmissions that result in penalties imposed by the Centers for Medicare & Medicaid Services (Cipriano, 2011).
Recommendations for Removing Barriers
Education, communication, and collaboration result in effective care coordination. Increased longevity of persons with I/DD means that there will be an expected increase in their acute healthcare needs (Fisher et al., 2012). Educating nurses and healthcare team members across all specialty areas regarding this population and their special needs will help promote the delivery of quality care. Educating nurses as well as nursing students about persons with I/DD can help improve the health of persons with I/DD (Graff et al., 2012). Healthcare professionals working in the acute care setting may have limited exposure to the I/DD population. Lack of familiarity breeds anxiety, discomfort, and avoidance. Because this population is living longer, there is an increased likelihood of encountering the persons with I/DD in the orthopaedic setting related to their propensity to osteoporosis and risk for falls. Integrating exposure to this population in the nursing education curriculum and disseminating information to practicing nurses through publication and continuing education will promote a better understanding of this special population and their care needs.
Communication and collaboration with the interprofessional healthcare team and the I/DD care coordinator are imperative to ensure delivery of quality care. Often, the person with I/DD is not able to communicate with the nursing staff. Direct care staff that accompanies the I/DD individual is ill-prepared to communicate the intricacies of their past and present health status; therefore, it is imperative for the nursing staff and the care coordinator to maintain open lines of communication (see Table 1 for questions for the care coordinator). Interprofessional collaboration and teamwork among the healthcare team during hospitalization and especially during discharge planning are essential. It takes time, skill, and perseverance to coordinate and seek solutions collaboratively for this vulnerable population. This effort is well spent resulting in effective care and discharge planning for a person with I/DD. Research indicates that the effects of interprofessional education and collaboration improve patient outcomes (Valentine, Nembhard, & Edmondson, 2012).
Conclusion
Care coordination is challenging in any healthcare setting, but when the person with I/DD becomes ill and moves from the community residential setting to the acute orthopaedic care setting, it becomes especially problematic. Advances in healthcare are helping individuals with I/DD increase their longevity. When discharged from the acute care setting, Betty was appropriately placed in a skilled nursing facility for rehabilitation. Following successful rehabilitation, she experienced a smooth transition back to the residential care setting. Care coordination is an essential component toward ensuring quality care in the patient with I/DD, in both the acute orthopaedic care setting and the residential setting. Effective communication and collaboration in addition to education within the interprofessional healthcare team during discharge planning can result in reduction of patient complications and hospital readmissions.
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