Intellectual Disability (Mental Retardation); Special Healthcare Needs

Until recently the term Mental Retardation (MR) was used in the United States to describe a group of individuals with limited intellectual functioning and physical limitations. The American Association on Intellectual and Developmental Disabilities (AAIDD) moved to change the term from Mental Retardation to Intellectual Disability to reflect the impact of the disability in the environment (Schalock, et. al., 2007). Intellectual Disability affects about 1% - 3% of the population (Schuurs-Hoeijmakers, et.al, 2012). Due to the prevalence of this disorder, nurses can come in to contact with these individuals at many levels of care and in a variety of settings. It is imperative that nurses have a working understanding of the new term as it relates to the care of ID patients.

The new definition encompasses the diagnosis and assessment aspects to further describe how ID is measured and observed (Schalock & Luckasson, 2013). Thus providing a more focused guide for practice. The operational definition of ID is "… a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills and originates before the age of 18" (American Association on Intellectual and Developmental Disabilities, 2011, pg. 1). This definition echo’s the same characteristics of the previously used term mental retardation. The essential elements of the diagnosis continue to be a limitation of intellectual functioning as defined by an IQ test, behavioral limitation of adapting to the environment, and early age of onset.  The changes to the verbiage of the diagnosis reflect the relationship between the individual and environment. This further reflects a move in mindset from a person-centered disorder to an environmental-centered disorder that can aid the practitioner in finding support for the individual (Schalock, et.al, 2007).

The change in the term further reveals the current research on diseases as a whole. Research is continually showing the role that society has on policy and the roles of those with health disparities. Also, the ideas of separating biology and social causes of disease are becoming more blurred, as practitioners understand the disease process better (Schalock et.al. 2007). Lastly, the ideas on what a disability is have changed to reflect how the person interacts with society not just the person’s limitations. In other words, humans are multifaceted beings and the description and diagnosis needs to reflect that along with environmental relationships.

The new definition emphasizes several assumptions adopted by AIDD and WHO. First is that the individual’s function must be assessed within the context of their environment and typical of their developmental age. Second, culture and language must be considered as well as sensory skills, motor skills, and other behavioral factors appropriate for the culture and age group. Third, it is necessary to identify the individual’s strengths. Fourth, a profile of needed support is developed by thoroughly describing the limitations. Lastly, identification of supports over the individual’s lifetime can show marked improvement in functioning (Schalock & Luckasson, 2013).  This new term better aligns with current practices that focus on functional behaviors, the environment and personal characteristics. These are elements that need to be addressed in the care for the ID patient. Currently there are several barriers to care for this population that revolved around these elements.

Those with intellectual disability have a great need for health care services. However, there several disparities with this population that result in decreased access of services. Havercamp and Haleigh (2015) reported that people with Intellectual Disability are not only more likely to have more health problems but are less likely to get the support they need both physically and emotionally. The 2002 and 2005 reports from the U.S. Public Health Services (USPHS) state that those with intellectual and developmental disabilities have more health issues, shorter lifespans and are less likely to get the health care they need. The Institute of Medicine’s report The Future of Disability in American (Field and Jette, 2007) identifies the lack of inclusion of people with intellectual disabilities in public health programs. One of the most significant barriers to this group obtaining the required health care is the lack of professional health care training.  Minnihan et. al. (2011) reports that information on how to recognize and implement strategies is limited for practitioners.  Brown and Kalaitzidis (2013) further report three themes emerging that impact barriers to care for these individuals; competency, attitude and organizational management. Nurses have a duty to understand the needs of these patients and to learn the skills required in their care.  

Evidence based practice themes have emerged from the literature, such as education and health care screening skills. Practitioners should recognize how the relationships of the person and environment impact each other and drive care. Brown and Kalaitzidis (2013) found that nursing needs to enhance certain skills including knowledge of the disorder and care of the patient at various health care levels. In particular was the need for increased time and detail required for assessment of the ID patient. Lack of time was reported a significant barrier to care as well as a lack of understanding on how to communicate with the non-verbal or behaviorally challenged patient (Brown & Kalaitzidis, 2013). Hames and Carlson (2006) and McColl et.al (2008) report that providers are also unaware of what services or programs are available in the community. As a case manager or patient advocate, nurses should explore the unmet need of the ID patient in the environment and seek to explore a community approach to integrate in care planning.

Some other areas that have been explored for the ID patient are waiting room environments. McColl et al (2008) concluded that waiting rooms layout and noise could cause significant distress for the ID patient. The study also reports that the short appointment times are not conducive to a complete and thorough health history for these patients. These are areas where the nurse can promote improved patient care.

Nurses play a valuable role in the initial and ongoing care of this population.  Studies such as Backer, Chapman and Mitchell (2009) found that nurse along with other health care professionals lack adequate education required to treat the ID patient. However, providing nursing care revolves around the basic premises of the nursing process including therapeutic communication and assessment. In particular, the nurse should be sure to take extra time with the patient and the family to fully understand the level of functioning and care needs of the patient. Therapeutic communication techniques include getting to know the person and the family or caregiver as well as what is important regarding care (Williams, Roberts, Irvine, Hasting, 2010). Furthermore, the nurse needs to understand and accept that the patient may have difficulty communicating his or her own needs or may not communicate at all (Guidelines for managing the patient with intellectual disability in accident and emergency, n.d.). Nurses may need education in alterative communication methods and understanding of how the non-verbal patient may communicate needs.

Another are the nurse needs to be aware of is the assessment. Sowney and Barr (2006) reported a need for nurse to understand the assessment process for the ID patient. Namely, observation of the patient and picking up on cues that may be seen during the assessment process. Another aspect noted by Williams, Roberts, Irvine and Hasting, (2010) is that the assessment and care plan are multidisciplinary. Several practitioners are involved in the evaluation and treatment of the patient. This is particularly important when seeking resources for the patient and the family in the community (Webb and Stanton, 2009). The nurse may have be an advocate for the patient and the family in care planning process. Therefore, the nurse will need to be aware of what community programs or organizational programs are available for the patient and the family.

Rebecca is a 32-year-old female that was diagnosed with moderate ID at age 6. Her sister has cared her for for many years. Rebecca has been seen by her family physician for routine screenings. The family practitioner recently added more providers to his practice and thus the waiting room is usually crowded. Rebecca’s sister began to notice that Rebecca would get very anxious and often start to rock and pace in the small waiting room. The new additional staff did not know how to handle Rebecca’s reaction to them, which was loud. Rebecca’s sister requested to talk to the nurse about this situation. The nurse agreed to ask the other physicians at a staff meeting if there was anything they could do to make Rebecca more comfortable. The nurse had observed that Rebecca was always difficult in the examination room.  Although Rebecca could speak a few words, she would become non-verbal and would hit the wall during the exam.

The nurse in the case was not aware of any additional techniques to help Rebecca and in fact did not recognize the anxiety she exhibited until the sister brought the behavior to her attention. The nurse decided that she needed to learn more about ID and how, as a nurse she can help this patient. First the nurse decided to meet with Rebecca’s sister to gain a better understanding of Rebecca’s needs and current status. The nurse also learned that she needed to approach Rebecca calmly and warmly when she started to get tense and hit the wall. She noted that her attitude would help Rebecca feel more relaxed. The also decided that at Rebecca’s next visit, if the waiting room was loud or quiet, she would take Rebecca and her sister to a different room and check on them frequently. Rebecca’s sister told the nurse that Rebecca would rock back and forth as form of comforting herself. The nurse thought this would be important to pass onto staff. The nurse also decided to learn more about various non-verbal cues of an ID patient to share with staff and talk about positive regard as well as personal space for these patients. Further more, the nurse sought out community resources that she could share with Rebecca’s sister.

The nurse met with the staff and developed a plan for Rebecca that everyone could follow. First she suggested that Rebecca and her sister be allowed to sit in the old smaller examination room that is not used anymore if the waiting room became too noisy. They all agreed and several staff members offered to clean up the room. Next the nurse discussed how to recognize that Rebecca was becoming agitated. The ID patient may rock back and forth, look anxious, or get loud. If in doubt, they all agreed to ask Rebecca’s sister if she is becoming more anxious. Effective communication with Rebecca would entail using simple words, speaking slowly, pausing often, waiting for non-verbal cues and using visuals if necessary. They all also agreed to ask Rebecca’s sister if they were in doubt of how to communicate with her. The nurse and the physicians agreed that Rebecca would see the same physician if at all possible and they would set aside extra time for her evaluation. The nurse also discussed these ideas with Rebecca’s sister who agreed and was grateful the nurse took the time to advocate for Rebecca.

Nursing has not only a responsibility to care for patients but also the responsibility to keep current on new practices to help care for patients. The ID patient can be challenging and studies show that education is a key factor that is missing the assessment of this population. By understanding the ID definition and care of the ID patient nurses advocate for improved environmental strategies and health care strategies to assist the patient and their families in removing barriers they face.

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