I recently led the process of creating a job knowledge assessment for nurses working in the intellectual and developmental disabilities field. My team had to take a close look at what makes IDD nurses unique.
We identified three knowledge domains that were essential for IDD nurses that might fall outside of the traditional education of a nurse. As Kathy Auberry, DNP, RN, CDDN, explains in her recent blog post, the education of healthcare clinicians at all levels rarely includes information about the distinctive and oftentimes complex medical conditions of people with IDD. Furthermore, traditional education rarely trains clinicians on how to deal with the communication challenges and behavior issues common in the IDD population.
Finding the right nurse — or filling in knowledge gaps of your current nursing staff — can improve the quality of life of the individuals you serve, and it may even save lives.
IDD conditions and assessment
Understanding the causes of IDD conditions and how to assess them is a skill every health clinician should have, but it is especially important for nurses working with the IDD population.
Though an individual may already have a diagnosis, a nurse needs to know what makes that condition unique and what co-morbidities are common. For example, an IDD nurse would need to know that individuals with Prader-Willi syndrome have an increased risk for obstructive sleep apnea, and that excessive daytime sleepiness may be a warning sign.
Many individuals with IDD have co-morbidities secondary to their disability diagnosis. These conditions may be related to the cause of the disability, such as frequent or more severe infections in people with Down syndrome due to issues with their immune system. Or the co-morbidity may be the result of some behavior associated with the core IDD diagnosis, such as malnutrition in an individual with autism due to restrictive food preferences.
Behavior management and interventions
A common mantra in the IDD world is “behavior is communication.” Behaviors can mask health conditions that range from uncomfortable to life-threatening. Head-hitting may be a sign of frustration or it could be a reaction to a headache, which can have a range of causes that warrant examination. Constipation may cause pain that an individual expresses through negative behaviors, but without proper diagnosis constipation can develop into bowel impaction, which can be fatal.
When anxiety or other mental health conditions are the causes of behaviors, nurses play an important role in understanding what medications are appropriate and how to weigh the possible benefits against the possible side effects. Given that an individual with IDD may not be able to explain some of the side effects common to psychiatric medications — like dizziness or dry mouth — a good IDD nurse needs to be able to see the signs.
Furthermore, nurses play an important role on an individual’s behavior management team. As this article in Behavior Analysis in Practice points out, “behavior analysts are not trained to diagnose and treat health problems, and health professionals do not have the expertise in applied behavior analysis to identify response-reinforcer relations. Therefore, comprehensive assessments should be a collaborative effort between these professionals.” This is true for any team creating a behavior plan or considering behavior interventions. Medical expertise is critical.
Person-centered planning and service coordination
Participating in planning and service coordination is not something most nurses have experience with. However, an individual’s service plan has a significant effect on their quality of life. It makes sense that a nurse familiar with the individual’s health, condition and co-morbidities would be part of that conversation.
An IDD nurse must be able to put person-centeredness at the core of their practice, rather than using the medical model. Cathy Kluttz-Hile, RN, BSN, MA, CDDN, explained the difference between the two models in her recent webinar. The medical model is concerned with resolving health problems and looks at the body as a machine to be fixed when broken. The person-centered model of healthcare considers the values, desires and goals of the individual.
Let’s say an individual is put on a medication that is effective for addressing behavior issues but makes them tired during the day, interfering with the individual’s goal of participating in Special Olympics. A person-centered IDD nurse might work with the individual’s service team to create a plan for getting them off the medication and identifying other options or strategies for managing behaviors, including an increase in physical activity, for example.
Assessing IDD nurses
Nurses are in high demand, and IDD service providers may feel like they can’t be picky when it comes to hiring or contracting with a nurse to serve their residential facilities. That’s what makes a job knowledge assessment for nurses so important.
IDD service providers can use such an assessment to identify the areas where a nurse needs more training. If you are a Relias client, you can use our courses to fill in knowledge gaps on both medical and IDD-specific topics. This will result in better healthcare and quality of life for the people you serve.
Challenges for Nurses in IDD: Practice Settings and Role Ambiguity
Nurses who care for people with IDD provide services for a variety of organizations in a variety of settings. The responsibilities and scope of their role often are unclear. Kathy Auberry, DNP, RN, CDDN, looks at the challenges facing these nurses.Watch the webinar →