Whether it's better understanding one's abilities, proper disability etiquette, or increasing our awareness as providers, there is always room for us to grow and improve our ability to care for our patients. CHATID hopes you can use some of this material to help you enhance this care, and share it with others as well!
The language a society uses to refer to persons with disabilities shapes its beliefs and ideas about them. Words are powerful; Old, inaccurate, and inappropriate descriptors perpetuate negative stereotypes and attitudinal barriers. When we describe people by their labels of medical diagnoses, we devalue and disrespect them as individuals. As healthcare providers, our patients are at the center of everything we do, and using proper person first language lets them know that we truly believe this!
As medical advances continue to help prolong our patients lives, we will encounter more individuals with all types of disabilities. And as we know, a large part of learning is in our experiences. Some of these resources are derived from just that, personal encounters and experiences, and the lessons learned from them. The most comprehensive one was created by Dr. Dave Escudé, MD, and along with DETECT (Developmental Evaluation, Training, and Educational Consultative Team of Mississippi). The Disability Etiquette Sheet has tips for how to properly interact with individuals with disabilities and would be great hang in your office space. This was developed in conjunction with the "Patient Voices" video created by the Medical Home Project.
Inclusive Health is a movement to improve health care quality and access for patients with intellectual disabilities. There are simple steps we can all take to promote inclusive health. This website provides checklists to that end for a variety of audiences including health care providers, fitness and wellness professionals, professional associations, and business and corporate entities. These steps can help to gain healthcare equity not only in health services, but also in health policy, training programs, research, and funding. Click here to learn about complete Inclusive Health!
Defining health stigma is not easy. Like an amoeba, it changes shape as society changes. Most people know something of health stigma – the staring and double-takes, the personal questions asked by complete strangers, the handicapped-sticker vigilantes who question your right to use reserved parking if your condition isn’t obvious.
But when asked to define health stigma, most people stumble.
Rude2Respect is a national campaign to change all this – first and foremost, by teaching people what health stigma means. Rude2Respect’s mission is to build awareness of the impact of stigma related to seen or unseen health conditions; to start the dialogue to help the public understand respectful behaviors; and to provide coping skills and resilience training to individuals who are being stigmatized. See here on how to become educated so you can help change the stigma too!
Every good healthcare provider will have a stethoscope, reflex hammer, tongue depressor, maybe an otoscope, etc. However, what makes a great provider is one that has all of the tools to adapt to any situation that can arise with any patient. Below are some really great toolkits that will help provide you with the information and tools to really strive for excellence in caring for patients with disabilities!
This toolkit is designed for health care professionals to become more comfortable and adept at providing quality health care to patients with intellectual and developmental disabilities (IDD). There are general tips for communication, acquiring informed consent, behavioral crises, medications, etc. There are also more specific tools for interactions with specific disorders ranging from Autism to Prader-Willi Syndrome to Fetal Alcohol Spectrum Disorder. It was designed by the Vanderbilt Kennedy Center to improve the primary care of people with intellectual and developmental disabilities and for research.
The Health Equity Resource Toolkit for State Practitioners Addressing Obesity Disparities provides practitioners with a six-step process for planning, implementing, and evaluating a program to address obesity disparities. Using this resource, you should be better prepared to make systemic and environmental changes to reduce the obesity disparities that disproportionately affects patients with disabilities and provide equitable care for all patients. It was created by the CDC to increase the capacity of state health departments and their partners to work with and through communities to implement effective responses to obesity in populations that are facing health disparities.
For an even greater list of resources and toolkits such as these, check out the AADMD (American Academy of Developmental Medicine and Dentistry) resource list!