The Argument for Advocacy

  • Post category:Op-Eds

Author: Lauren Clarke, BS, MHA, Stanford University, candidate Medical Doctorate/Masters of Arts in Education program
Published in: Helen, July, The Journal of Human Exceptionality
Date: Jul 21, 2023

My passion for working with people with intellectual/developmental disabilities (IDD) started in high school. I wanted to get more involved in my community, something I hadn’t previously had a lot of time to do as a competitive swimmer. I found an open position as a volunteer swim coach for my local Special Olympics team and quickly fell in love with the organization. I missed coaching so much in college that I started a Special Olympics team at my undergraduate institution that was entirely organized and coached by students. I made some of my closest friends and most treasured memories through that team. 

Special Olympics, and the connections I was lucky enough to make through the organization, is what ultimately led me to medical school. As a medical student, I’m always looking for opportunities to get more involved in my community. I’ve learned more about how to care for people with IDD through conversations with Special Olympics athletes during “Walking Club” than I’ve ever learned in class. And a lot of these conversations revolve around how important community-building organizations like the Special Olympics are for people with IDD and their families. 

I’ve spent the last two years thinking a lot about what skills I need to be a good doctor for all of my future patients, including those with IDD. I’m now more confident than ever that a doctor’s role (or the role of any health care professional) should extend beyond the walls of the clinic as a clinician and into the community as an advocate. 

Community involvement and integration are vital to everyone’s health and well-being, but people with IDD often face unique barriers when trying to develop and maintain a sense of community. I’ve heard too many stories of parents feeling lost after their child is diagnosed with an IDD, many of whom are told about the importance of early intervention, but not given any tools to help them navigate community programs. I’ve also talked with adults with IDD who are having a hard time finding social support or help with housing and employment. The commonality of these experiences is indicative of just how challenging it is to navigate community programming for people with IDD. 

Because of how common these experiences are, and because of how important community involvement is to health, health care professionals should embrace the role of community advocates for people with IDD and their families. Health care professionals already serve as gatekeepers to many community programs for people with IDD. For example, participation in Special Olympics requires a sports physical, which inherently assumes access to a primary care provider. Many states require proper documentation of disability by a health care provider for the receipt of services. Health care providers may also occasionally have roles in the legal determination of disability during adjudicatory hearings and appeals. 

Health care providers often see people at their worst, and many of us go into the profession for exactly this reason: we want to help people when they need it most. And while this help often takes the form of a referral to a medical specialist or a prescription for a medication, it should also involve similar referrals and connections to community programs. The confused and concerned parents who were just told their child has an IDD should be handed a guide to local organizations and programs that will support both their child and other members of their family. As people with IDD get older, their health care professionals should talk with them not only about their physical and mental health but also about their social lives and inquire about things such as jobs, independent living, and post-secondary education when appropriate. If their patients express challenges with any of these domains of their lives, health care professionals should be just as comfortable providing them with names of community organizations that can help as they are with providing them with treatments for common medical conditions.

I realize I’m asking for a lot. People with IDD often struggle with accessing basic health services, and it is not unheard of for clinicians to deny care to people with IDD. Additionally, health care professionals are already incredibly overworked and overwhelmed. But I would argue that we can take steps to decrease the burden experienced by health care professionals and lower the barrier to advocacy. Local community organizations should be encouraged to form connections with the medical community in their area and provide easy access to information about their programs. Larger disability-focused organizations, such as the State Councils on Developmental Disabilities, can work with local organizations to consolidate resources and provide health care professionals with a “resource guide” to make it easier for them to connect people with community programs. National organizations, such as the American Academy of Developmental Medicine and Dentistry (AADMD), can also assist with training their members on how to be successful advocates. An equal partnership between local programs, larger organizations, and the medical community will ensure that the burden to healthcare professional advocacy is decreased. 

While these steps can be taken to reduce the barriers to advocacy for current health care professionals, an additional step can be taken to reduce the barriers to advocacy for future health care professionals: education. Current health-profession students should be educated on how to serve as community advocates for all of their patients, especially those with IDD. In developing the Core Competencies on Disability for Health Care Education, the Alliance for Disability in Health Care Education recognized this and stated that students should be able to “list systems of community-based services and supports that may be useful for people with disabilities outside of the clinical care system” and “demonstrate skill in identifying, coordinating, referring, and advocating for access to community and health care resources needed to support treatment plan objectives.” But speaking as a medical student, I can attest that my education in this space has been lacking.

There are many qualities that make good health care professionals for people with IDD: communication skills, patience, flexibility, and empathy are all vital qualities that clinicians must master when working with this population. However, if people with IDD and their families remain overwhelmed and unable to access community support, good health care can only do so much. Local programs, larger organizations, and health care professionals need to work together to reduce the barriers to community advocacy for current health care providers. Additionally, when developing disability-focused curriculum materials, health professions training programs should ensure that they are educating their students on community-based resources and how to serve as advocates for all of their future patients. These actions have the potential to reduce the barriers to community involvement and engagement experienced by people with IDD and their families, which will almost certainly have a positive impact on their overall health and wellbeing.