I first began working with individuals with intellectual and developmental disabilities in the late 1970s, when the state of North Carolina turned the tuberculosis sanitorium where I worked into a developmental center. Over the past 40 years, I have witnessed the transition from institutional care to community settings—and with it, tremendous improvements in the quality of life and quality of medical care for individuals with IDD.
However, information about the unique needs and experiences of people with IDD has not yet entered mainstream medical education or practice. In my current work as a trainer and consultant, I regularly encounter inaccurate and even discriminatory conceptions among medical professionals regarding individuals with IDD.
Providing health care for people with intellectual and developmental disabilities requires understanding multiple factors and numerous challenges. Some of these are:
- How the person communicates;
- How the person’s specific disability or syndrome affects their life and their health;
- What type of diagnostic labels they have been given;
- Informed consent and liability;
- External and internal limitations in choice- and decision-making;
- Trauma and adverse childhood experiences; and
- What is important to the person in their life.
Understanding a person who does not use words to communicate or uses limited language requires time and creativity. Observing behavior and interpreting what is being communicated takes patience in a system that is often stretched for time.
Diagnostic labels and overshadowing can get in the way of communication and effective care. Obtaining information about the person’s baseline behavior and recognizing behavior changes is key to accurate assessments. Often, challenging behaviors are attributed to the person’s diagnostic labels, i.e., he is hitting his head because he is a person with autism. This overshadowing can prevent those providing care from figuring out if the person has a headache or earache that he or she can’t tell us about.
It’s important to remember this mantra of the disability community: Behavior is communication.
Many healthcare providers have never been educated on the specific health issues related to the causes of certain disabilities. Getting information from families and the person with the disability often is helpful. But when neither the healthcare provider nor supporters have the necessary information, knowing where to go for assistance is vital. Genetic testing may unlock a wealth of information about an individual’s disability, co-morbid conditions, and healthcare and support needs.
In addition, the healthcare provider should be aware of the individual’s trauma history. Trauma and adverse childhood experiences are huge issues for people with IDD. Statistics show that more than 90 percent of this population have experienced trauma, abuse and adverse events in childhood.
Trauma responses include fight or flight, anxiety, sleep issues, emotional problems such as feeling numb or disconnected from the environment, memory problems and flashbacks. Adverse childhood experiences range from abuse, neglect, or not being raised by your biological parents to having a household member who is an alcoholic or has a chronic mental illness. Healthcare providers need to do their best to gather information about such experiences and consider their impact on the mental and physical health of their patient.
Informed consent and liability play a large role in providing health care for the person with IDD. We all want to have health and safety on our own terms, and this is often complicated by the fact that many people with IDD have guardians.
Sometimes the guardian is appointed by the state and may not know the person well; sometimes it’s a parent or family member who is used to being in control of the person’s care. Family members may not understand the concept of substituted decision making. The guardian should not make decisions based on their own preferences, but instead they should support a person in making a decision, or they should make the decision they think the person would want. For the healthcare provider, ensuring that the care they provide is quality-based and competent is important and can conflict with what a guardian or the individual wants.
Other pertinent issues include understanding that a person with IDD may have had limited opportunities to make choices throughout their lifetime—either because of their disability or because of the people who have cared for them, or some combination of factors. Many people with IDD are taught to say “yes” even when they want to say “no.” The individual also may have little understanding that with choice comes responsibility and/or consequences.
Important To vs. Important For
Finally, and challenging to healthcare professionals, is the concept of determining what is important to and what is important for an individual and how to balance these two ideas. Important to things are those things that make us feel comforted, fulfilled, satisfied, happy, and content. Important for things are those things that keep us healthy and safe, as defined on our own terms, and those things that help us to make connections in our communities. Very few of us ever do something that is important for us unless some part of it becomes important to us.
I am sure most healthcare providers would raise their hand if asked, “Are you person-centered?” Being able to successfully navigate the issues and challenges when providing health care for a person with IDD is challenging. I believe that the start of this is to understand that when we provide care to the person with IDD we are not respecting their ability to have control in their life, so we must strive to provide health care for the person with IDD by supporting them through these challenges.